CREATE YOUR SHIRT & CHANGE A LIFE

The Comeback Kids II

December 03 - December 16

Ronan Thompson Foundation

The Ronan Foundation is dedicated to raising awareness and funding cutting edge research for childhood cancer. We are committed to funding clinical trials to reduce the number of children affected by childhood cancer, increase survival rates and minimize long term medical and psychological effects of treatment.

We are committed to funding cutting-edge research to improve treatments for children with neuroblastoma. Neuroblastoma is a childhood cancer that most commonly affects kids under 5 years old. It is a super aggressive cancer with a survival rate of less than 60% with current treatment modalities. After initial treatment, there is a 50% chance of relapse and there is no known cure for relapsed neuroblastoma. New, more effective treatments for relapsed neuroblastoma is our top priority.

Fanconi Anemia Research Fund

Our mission is to find better treatments and a cure for Fanconi anemia and to provide education and support services to affected families worldwide.

The Fanconi Anemia Research Fund (FARF) is the world leader in advancing research for better treatments and a cure for Fanconi anemia. Founded in 1989 by parents Lynn and David Frohnmayer, FARF has supported 232 grants to 74 institutions and 152 investigators worldwide. Over the last 29 years, our outstanding donors have enabled us to fund $23 million in research grants.

Fanconi anemia (FA) is an inherited DNA-repair disease that may lead to bone marrow failure (aplastic anemia), leukemia, and/or solid tumors. It is primarily a recessive disorder: if both parents carry a defect (mutation) in the same FA gene, each of their children has a 25% chance of inheriting the defective gene from both parents. When this happens, the child will have FA.

Scientists have now discovered 22 FA or FA-like genes. FA occurs equally in males and females. It is found in all ethnic groups. Research has added years to the lives of people with FA. Decades ago, children rarely survived to adulthood. Now, there are adults with FA that live into their 30s and beyond.

FA can affect all systems of the body. Many people with FA eventually develop acute myeloid leukemia (AML). FA patients are extremely likely to develop a variety of cancers and at a much earlier age than patients in the general population. Patients who have had a successful bone marrow transplant and are therefore cured of the blood problem associated with FA still must have regular examinations to watch for signs of cancer.

Common Threads Family Resource Center

Common Threads Family Resources Center, located minutes from Madison, WI, offers school and mental health programs geared toward individuals affected by autism, behavioral disorders, and mental health challenges. Our experienced and talented team of professionals creates a daily environment of acceptance and growth where students and clients flourish.

For more than 8 years, Common Threads Family Resource Center (just minutes from Madison, WI) has made it our mission to bring together the most passionate professionals in the field of autism treatment, education and mental health for the benefit of our clients. Our community of professionals offers many years of combined experience. Our multidisciplinary team includes top professionals from multiple treatment, development, and educational areas to ensure we provide the most appropriate and forward-thinking services for every individual client. Working collaboratively, we are far stronger.

Focus on Lyme

Focus On Lyme was started to improve diagnostics, treatment, prevention and advocacy for patients suffering from Lyme and associated tick-borne diseases.

Many stories of Lyme disease are similar with misdiagnosis and lack of proper treatment options while debilitating symptoms worsen. Many physicians simply do not believe in a Lyme diagnosis and patients are forced to pay out-of-pocket for treatments and medication, not knowing if they are helping or hurting. Even after patients are feeling better, they are unsure if they are healed or in remission.

The typical Lyme patient cannot afford to travel cross country to seek out care from a Lyme specialist. Nor the out-of-pocket costs associated with IV antibiotics and cash pay office visits. Many patients are so ill and tired they cannot advocate for themselves in an insurance system that does not recognize their condition.

Focus On Lyme was created to help all Lyme patients by making effective change within the diagnosis and management of this disease so patients maintain a quality of life.

Brendan Rare Heart

Brendan is a very unique young man. He is a sweet little boy in the body of a very old man. He was diagnosed with ostial atresia of the left main coronary artery and endocardialfibroelastosis (EFE) when he was 2 1/2 months old. He had his first open heart surgery at 3 months old. He has been through a total of two CABG bypasses, a stenosis repair and ultimately required a heart transplant just before he turned 2 years old. He has had five major heart attacks and has had many smaller events. He also has an unspecified form of dwarfism, chronic lung disease and chronic kidney disease. During the summer of 2017, he spent his whole summer break being tested and they found he acquired post transplant lymperoperative disorder (PTLD) and it manifested as large B cell lymphoma on his left lung in the same area where he has a lot of scar tissue from his never-ending pneumonias. For someone with so much going against him, Brendan is a kid who rarely ever complains. He is a busy and will go until he collapses because he just can't stand to miss a single thing. He loves to laugh and run and play. He likes to think he is a ninja and a wrestling champion. He wants to be a police officer, a firefighter, a trash collector, and a scientist. He has a wicked sense of humor. He has a passion for all foods that are spicy and puts hot sauce on everything. He'd probably put hot sauce on ice cream if I'd let him but I can't stand the thought. He has crazy dance moves he learned from his brothers. He wants to pretend he isn't sick.

As his mom, my whole entire goal now that he is finally getting older (when they weren't really sure he would make it to the age of 2) is to make sure he has a quality life. It is not realistic to think he's going to live forever because even now, behind his shining spirit and active life, his medical team and I are trying to control his blood pressure, his ability to breathe, and balance all his medications. The damage that some of his medications can cause his organs has sort of been held at bay but it's starting to catch up with him. I can't promise quantity, so quality is the goal. I would love to get a portable oxygen condenser for when he starts needing oxygen more consistently, heck, I'd love to get any equipment that insurance won't cover that will make him as mobile as possible. Brendan was switched over to a palliative model of care about two years ago because he's tired of being poked and prodded and he just wants to be outside the walls of the hospital. Palliative care gives him a voice that he wasn't allowed to have because he was "too young" and I was still living in fear of losing him.Palliative care makes it so he can go and spread his infectuous joy and courageous spirit with everyone he meets. He inspires so many people because he is able to just be now and he is just so cool. It's hard to stay in a negative frame of mind when someone so young and so sick can still be bouncing around even though, clinically he's nearly to the point where he could have a major stroke. He doesn't look sick much of the time and that is a testment to his powerful spirit. Brendan loves meeting people and anyone who is willing to get down to his level is offically good people in his mind. He is wise beyond his years and empathetic and just wants everyone to have fun in life with him. We are grateful to be part of this campaign to raise funds and awareness for other's trials and journeys as well.

Sincerely,

Brendan's mom,

Genevieve Davies
  • Artist

    Brendan

    7 yrs old

  • Artist

    Jessalyn

    14 yrs old

  • Artist

    Sebastien

  • Artist

    Carter

    9 yrs old

  • Artist

    Maya

Excerpt from Brendan's Story: Brendan is a very unique young man; he is a sweet little boy in the body of a very old man. He was diagnosed with ostial atresia of the left main coronary artery and endocardialfibroelastosis (EFE) when he was 2 1/2 months old. He had his first open heart surgery at 3 months old. He has been through a total of two CABG bypasses, a stenosis repair and ultimately required a heart transplant just before he turned 2 years old. He has had five major heart attacks and has had many smaller events. He also has an unspecified form of dwarfism, chronic lung disease and chronic kidney disease. During the summer of 2017, he spent his whole summer break being tested and they found he acquired post transplant lymperoperative disorder (PTLD) and it manifested as large B cell lymphoma on his left lung in the same area where he has a lot of scar tissue from his never-ending pneumonias.

For someone with so much going against him, Brendan is a kid who rarely ever complains. He is a busy boy and will go until he collapses because he just can't stand to miss a single thing. He loves to laugh and run and play. He likes to think he is a ninja and a wrestling champion. He wants to be a police officer, a firefighter, a trash collector, and a scientist. He has a wicked sense of humor. He has a passion for all foods that are spicy and puts hot sauce on everything. He'd probably put hot sauce on ice cream if I'd let him but I can't stand the thought. He has crazy dance moves he learned from his brothers. He wants to pretend he isn't sick.

Sincerely,

Brendan's mom,

Genevieve Davies

Jessalyn is a 14 year-old freshman from the Madison, Wisconsin area. She enjoys listening to music, playing sports, participating in various art activities, and hanging out with her friends and family.  Jessalyn designed the skull t-shirt to help raise money for Common Threads Family Resource Center!

Sebastien Millon is an artist. His work is noted for its lack of vision and his art is usually muddled in a turbid stew of crockery. Many artists, art critics, and frankly most of the public views his work with great disdain and disrespects everything he is about (no one actually even knows what he is about, including the artist himself). Sebastien also has a blog, the following is an excerpt:  

Health History

Some of these posts are going to be incredibly self-indulgent. Talking about my health journey, my pain, my ...., my .... Part of it is, I think it will be cathartic for me. Plus I've been in such scary place with pain, that it is helpful writing about it and sharing. Maybe it helps me psychologically feel less scared, less alone. Maybe it gives me the illusion that I'm figuring things out. A bit of my health history, and how I contextualize my health situation: Pre-2005 Since I was a child, I'd had a variety of low level symptoms and weird things, but I could never quite put my finger on what was up. I was often times feeling uncomfortable or on edge inside my body. I also had quite a bit of insomnia, anxiety, lymph node discomfort, general body discomfort, vision headaches, very rarely sharp explosive pain in back of head, blurred vision issues, periods of manic energy and then total lethargy, concentration issues. These symptoms would all wax and wane in similar sequences together. At the time I chalked it up to my body's genetics and my particular personality and attempted to dismiss some of these things as "normal." Many of these symptoms I could mask, so no one around me had any idea that I was having any issues. Heck, I couldn't even describe most of those symptoms at the time, they were so vague and ebbed and flowed into each other. And even if the symptoms did worry me I was able to function at high levels, play a lot of sports, do high level academics, etc. I wasn't clairvoyant, but as the years dragged on I had an inkling that something was really wrong. It was like waiting for the other shoe to drop. I had no idea what form or shape it would take, but a sense of dread and fear began to permeate my youth. The symptoms seemed to be creeping on me, gradually becoming stronger, more noticeable to me. I'd always pushed myself intellectually and physically, I prided myself on that. I loved working hard and seeing what my body and mind were capable of, how much I could improve at things if I set my mind to it. I was blessed with a lot of opportunities, and I wasn't going to let them go to waste, regardless of what underlying thing was going on with my body. But once I got to college, I felt like I'd lost all my natural energy. I was losing my ability to pursue projects, maintain concentration, execute critical thinking like I once had been able to. This wasn't normal for an 18-19 year old. A deep exhaustion settled over my body. I started self medicating by drinking a lot of coffee, this would temporarily mask my issues but would aggravate certain things like my anxiety and ability to sleep. And obviously, with a thing like coffee, you are always needing to up the ante, increase dosage to chase those elusive energy levels. Sometimes I'd try to chalk up my issues to the stress of life, stress of college, etc. I hoped and wished stress were the be all end all, it seemed to affect a lot of people and I secretly hoped it was my main issue. Or maybe I was depressed or had underlying anxiety issues? except, I tended to have a very happy go lucky disposition, but my health was beginning to darken the clouds, for sure. Late 2005- At 23 years old, the other shoe finally drops. It dropped pretty damn far and hard. I fall ill with what seems to be the flu. Except this is no normal flu, my body seems to endlessly spiral into a hole of fatigue and pain, and I can't recover. I'm smothered by fatigue and pain. The fatigue seeps down to my bones. I had never ever been this tired. Symptoms I'd previously described from my youth all blow up in severity  (which is what leads me to believe I first contracted my underlying disease in childhood, basically the disease just lurked in the background for years). The pain in the back of my head and lymph nodes behind my ears is terrible and constant. I can't really even describe what was going on to doctors, my pain, fatigue, symptoms are all so overwhelming, and hard to pin down, they are constantly shifting like light in a prism. 2006- After many many many months of searching and testing in vain, the doctors (saw too many to count) eventually come to the conclusion that I had suffered mono and was now labeled with Chronic Fatigue Syndrome/Post Viral Fatigue. In hindsight, I now realize/theorize that mononucleosis was a trigger. It unleashed the underlying condition I'd had since I was a child, and if mono hadn't been the trigger, eventually some other trigger event would have taken place. Like I alluded to, I feel like my body's health had been slowly decaying over the years, the foundation was rotting, and it was being primed for a cataclysmic event. Mono was not the ultimate cause of my current situation, it was merely the surface trigger, and for many years we went with the wrong assumption that mono/chronic ebv was at the root of my issues. I ran into further complications, as one of the tests that was run in an effort to narrow down my diagnosis was a spinal tap. It ended up triggering even worse symptoms, burning neuropathy and burning head pain. I spent 6-12 months recovering from this pain, purely trying to survive the pain hour by hour,  day by day. It was the hardest period of my life (until now!). 2009- Having exhausted myself seeing doctors and never getting any progress, my family and I are recommended a doctor that one of our family friends (also a doctor) had met at a conference. Grudgingly I go see this doctor (I've lost all faith at this point of true help for my condition). This doctor specializes in research, namely looking at pathogenic etiology of chronic health issues like fibromyalgia and chronic fatigue. After some pcr dna lab testing, I'm given the first clue as to what might be going on: the lab work indicates I have a protozoa called protomyxzoa rheumatica (it had no name at the time). Obviously I'm skeptical of this information but am also excited. This is the only lead I've had in 3 freakin' years! I also have no idea to what degree this particular thing could be causing symptoms. And why, after seeing a billion other doctors, has no one found this thing?! But hope reigns eternal, and at this point after 3 years of chronic pain/being bedridden I'm willing to try things that are within the realm of logic, even if they go against conventional wisdom. This doctor actually has a treatment: antibiotics! My mother and I had long wondered whether lyme or a lyme like illness had been behind my health issues. My symptom make-up certainly fit the bill, and the results of my Western Blot were indicative of lyme, but not conclusive. A naturopath I'd seen early on thought I should explore and retest for lyme, but the test is expensive, so I ran this idea by my doctors and they all nixed the possibility of lyme. I did not pursue further lyme testing. I also assumed lyme had an immediate onset after exposure, plus I assumed all lyme cases present with the bulls-eye rash. Given my lack of exposure at 23 to ticks, lack of rash, lack of arthritic symptoms, I was also skeptical of lyme. But discounting lyme, and other infections was a bit of a mistake on my part, as with many of these pathogens, lyme can lay dormant or lowly symptomatic for years. And lyme, and its variety of strains, do not always present with the classic bulls-eye rash, and certain strains of lyme present not with arthritic symptoms, but manifest with more neurological symptoms like the ones I experience. I did not know any of this. Nor could I research any of this as I was too sick. Anyhow, this new doctor puts me on an antibiotic, and lo and behold I end up herxing (herxheimer is a die off reaction, where after taking an antimicrobial one has a flare-up of their usual symptoms, and sometimes new symptoms. Can be hard to distinguish from an allergic reaction. It's hard to say exactly if a herxheimer is a reaction to toxin release from dying pathogen or due to increased immune response. Or both.). Herxing is often a good indication that there is an underlying chronic bacterial/protozoal pathogen. I make improvements, but I have to introduce the antibiotic slowly due to the herxing. Slowly and gradually over the period of about 6-12 months I see improvements, I'm no longer bedridden, constantly needing to ice the back of my head. I still have my core symptoms but they are less acute.  This doctor also recommends a particular diet, mostly plant based, low fat, which turns out to be very helpful. I get a reprieve from constant smothering pain and tomblike fatigue. So while still always in pain, body discomfort, I have more energy to think of other things like... DRAWING! 2009-2014 I continue on this mono-therapy. I survive, and make do with what health I have, but it is very limiting. I still can't exercise without engendering massive flare-ups in my pain and symptoms. Going out and hanging with friends is still very hard. I concentrate on drawing when I can, it is hard, it takes everything I have. I can draw fun simple things, but the more complex, longer projects are hard to plan and execute. The best way I can liken it is that my body always feels uncomfortable to some degree, and that my mind always feels like it's on a ship deck in a roiling sea, slipping and sliding about and never able to find its footing. I still have to expend a lot of energy to compartmentalize pain and fatigue. Usually mornings are when I have some energy, afternoons I'm shot, but the pain and discomfort are always there to some degree. There is a wax wane to my symptoms that I can't ever put my finger on, but there certainly is some sort of a pattern to how the symptoms increase and decrease in intensity. I don't know what other treatments there are for this, but I find a certain rhythm to life. A simple rhythm. I suffer, but nothing like before. I make peace with my situation. 2014- At this point I'm starting to burn out with my status quo. I can't put in the hours and focus to improve and develop my drawing. If there is one thing I value, it's being able to grow, having the ability to push one's limits. But I'm also getting tired of the pain and being so trapped in and by my body. A couple things happen. I finally learn the name of the illness I've been diagnosed with (the organism hadn't been named until this point). Armed with the name, protomyxzoa rheumatica, I start researching and coming across other patients online. I learn that there is a much wider array of therapies available, and that mono-therapy with one abx it is usually not possible to recover, especially in cases as severe as my own. What I come to understand is the abx I was on brought me along, but I had plateaued and further treatment would be necessary to improve. Often times protomyxzoa is not the only infection at work, therefore considering lyme/coinfections is not a bad idea, especially given my response to abx and my previous WB testing. One problem is that the testing for lyme/coinfections is not very good. In fact it is ridiculously weak and inaccurate and the big kicker is that these tests are mistakenly used to offer a definitive negative diagnosis to patients with high likelihood of these diseases. There are a wide variety of strains for borrelia, bartonella, babesia, and a whole host of other bacteria and viruses that could be working in conjunction with this protozoa. Our testing does not test for a wide variety of these strains, we cast a small net, and since it is antibody based testing, well that is very iffy given the fact that borrelia is expert at hiding itself from the immune system. I presume some of the coinfections are hard to detect as well, but I'm not as well versed on their ability to hide from the immune system. I think it is safe to assume it could play a role and thus devalues the antibody tests. We have much to learn in the realm of these infections, we are scratching the surface, and it will take time before we can begin to understand which strains are actually present, which strains are pathogenic, and then untangle the facts to understand which particular infection is causing specific symptoms and chronic illness. This is usually why a broad spectrum antimicrobial approach is best in treatments for these chronic infectious diseases, you need to try and cover your bases. An important question is why some people can harbor these infections and not get sick, while in other people it triggers unrelenting chronic illness. There is a good chance that some immune system issues are at play, and possibly with the right mix and amount of infections the immune system hits an inflection point where it can no longer keep a lid on things. We still don't know a lot of the mechanics behind what is going on in these chronic illnesses, but places like Stanford are pursuing and asking the right questions in my opinion (http://med.stanford.edu/chronicfatiguesyndrome.html). But I'll tell you one thing, I'm not going to wait around decades to have the research tell me what is going on to confirm things. I've lost a decade already to this health issue, and I have a basic ballpark understanding as to what is going on in my body. Can I tell you the exact infections at play and which ones are causing what symptoms? Nope. But I can tell you antimicrobial therapy is the only thing that has ever helped improve my situation. It's tough and difficult therapy for me, but given the pain I've gone through, and the rocky situation I'm currently in from the crash, it's still completely worth it and I regret nothing. I fully plan on continuing antimicrobial treatments (albeit in a very conservative manner) plus supportive therapies. Back to my story. Realizing I'm leaving health on the table, and desiring to pursue a grander treatment strategy, I go talk to my doctor, and he adds an anti-malarial medication. It is very effective, but my big problem is the nature of my herxing. It is constant. I introduce the med slowly, and over months, while I'm still exhausted and unable to work, I can tell it is reducing the swelling and pain in my lymph nodes over time. But the symptoms it flares up, especially the fatigue and increased pain becomes exhausting. There is a particular symptom that is very hard, where you feel wide awake but completely exhausted, and yet you can't sleep. I've read enough about these infections to find out that there is phrase for this, as it is a common enough symptom with these illnesses: wired-tired. Describes it perfectly. I also start introducing a variety of detox methods to try and control and manage die off, and also some herbal antimicrobials. But eventually I burn out, and in 2015 I start on a therapy that is only dosed twice weekly, but very effective and powerful. I finally start being able to leave the house more, but the herxing still messes up my concentration and focus. The herxing also gives my body a manic energy, I feel like a coke bottle that's been shaken and ready to explode. My sleep is messed up too. But wow, I'm amazed that my lymph nodes in behind/under my ears are so much better from a year ago, still painful, but so much reduced in swelling. I believe that the size of swelling in my lymph nodes is indicative of the toxin/pathogen load, and that over time, as the pathogen burden is reduced through antimicrobials, the amount of swelling in the lymph nodes also decreases. To me, my lymph nodes are a marker that indicate the level of the pathogen burden. It takes many months to see improvements, but they happen slowly through persistent treatment. By the summer, confident I'm feeling better, getting closer to remission, and more impatient than ever to see the end of this thing, these 10 years of hell, of being trapped in my body... I see another doctor.  I tend to agree with his philosophy, to hit these pathogens in the body's various systems you need a wide array of meds, plus this way you can cover your bases and hit other unknown pathogens that may be of issue. He puts me on more aggressive treatments, multiple abx and multiple herbs. I have this therapy vetted by multiple doctors who agree it is a good treatment, thorough, and that my health history warrants these treatments, as all indications point to a systemic infectious disease cause for my illness. It feels good to be coming across multiple doctors finally giving credence to my issues, recognizing there is something going on here beyond psycho-somatic or post viral issues. There is a serious active infection(s) that somehow needs to be gotten under control. In fact, meeting these different doctors who validated my experience, well it made me want to cry. I finally felt like I was getting help from multiple doctors who believed in my case and my experience, and who understand the depth of how disabled and debilitated I've been from this thing. I love doctors, but most mainstream doctors can't get past the fact that I look so healthy, they can't understand that something can be crushing my life with constant pain and fatigue if it doesn't show up on standard tests and I look so good (thank you very much ;). The patient experience is devalued in favor of lab work they don't even always understand! I don't fault them for it, they don't have time to stay up on all these weird ass chronic illness infections plus the research is still developing, not to mention the unfortunate controversies surrounding lyme/coinfections. This is why the psychological component gets examined and usually the doctors will run with that, it is the easiest answer to a complicated situation. As I like to say, my psychology has been affected by my 10 years of pain and fatigue, but it is not the root cause of my issues. The doctors whom I do have a bit more of an issue with are infectious disease doctors. I've met some wonderful ones, but on average, they are extremely dogmatic in their approach to cases like mine. Chronic lyme, chronic infectious disease syndrome? total bullshit in their eyes. They have a term for patients like me: crazy. That's it. Frankly, if I'd become a doctor, I have no doubt that I'd look at a case like mine and think the exact same thing. I'd probably just feel sorry for this young, but healthy looking man who must have serious psychological issues that he keeps coming to bug doctors proclaiming he has these mysterious and hard to identify infections. But for me, as with many similar patients to me, there are too many things pointing to an underlying pathogen as a cause for our issues. My biggest problem with the infectious disease doctors is the amount of disrespect they show to patients like me. They are completely unwilling to look and think outside the current status quo, they dismiss us out of hand, even as the literature is growing legitimizing cases like my own. Sadly, within medicine, changes can take a generation or two, even after the science has proven a new paradigm. Also, there are the mechanics of $ at play, and this can be a huge factor in how medicine is practiced, how resources are distributed, and what access patients can get to medicine. If our infections are legitimized, then we will have to open the floodgates to a hell of a lot of longterm antibiotic use. This is a dangerous proposition, and maybe this is part of the fear for infectious disease doctors. But that is no excuse to deny the existence of our cases and the strong possibility that multi-systemic infections are at the core of our issues. And if their main concern is the overuse of antibiotics I'd recommend they call for a ban of the sale of abx for use in our livestock. 80% of abx are sold to that industry and many issues of resistance arise from their use in this context. Not to mention compounding factors like influential infectious disease doctors and their ties to insurance companies and IP issues that end up muddying the waters as well. It gets rather convoluted, but agendas are not as always geared towards the patient and public health as one might initially suppose and hope. Back to my story. For a while, I'm doing ok on these new aggressive therapies. I mean, I'm herxing like crazy, pain in head, lymph nodes, fatigue, insomnia, but I am surviving. The doctor tells me to push through, but then, after about a month, I start feeling like my body has gone haywire. The pain in my head takes on the nature of a constant explosion. I'm getting burning neuropathy, and just wish I could jump out of my body. I have to stop all therapy as this is a hell I cannot endure. But there is a problem. After a normal herx, the pain subsides within a few days-week after stopping therapy. Here, I have unleashed something so deep, nasty, unrelenting. So this is where I'm at. I've been off all treatments for 4 and a half months. I have been inching back to my baseline, but the pain has been hell. Very similar to what I went through after the spinal tap. It is the most draining pain in the world for me, it grips me, in the back of the head, it is a burning that puts my whole body on edge and holds me hostage. This kind of pain really sucks, it reduces me to a child, scared and impotent, seeking solace and refuge anywhere I can, because I cannot find it within my body. A few months ago, the pain was 10 times worse, the burning neuropathy was killing me and I couldn't sleep. But I'm still struggling to survive the days, some days the burning gripping pain lets go, and I can breathe and think of other things. It is going to be like this for a while, the pain waxes and wanes, and eventually it will dissipate into a more manageable kind of pain. But trying any antimicrobial, even baby doses of things I'd handled fine before just unleashes things even worse. It is frustrating and scary to be off meds for so long. But I have to listen to my body. It is giving me no other options right now. Psychologically, physically, mentally, pain is punishing. And this pain, is a kind of end of the world pain, it is in my head, and it seizes me so hard and it won't let go. It really does hold me hostage and when it lasts days on end it feels endless and hopeless. I could never have believed such pain existed. I know I will overcome it, I will be able to resume treatments. But it is a long game, I'm having to be patient, smart, and careful. But I have to admit, I am very scared. The pain puts me in a place of great fear and exhaustion. Sometimes I don't know how I'm going to survive it. It is completely destabilizing and makes my body feel out of control and unmanageable. The new doctor I'm seeing, whom I just saw the other day, has said some patients do crash like I did.  That's what my original doc who dx'd the protozoa also said. They both say the protozoal infections can be some of the most brutal, in terms of pain and herxing, especially if there are multiple infections involved. Part of me is really angry. In hindsight, this new doctor I was seeing really pushed me to ramp up on too many meds too quickly, and he put a lot of pressure on me in spite of the concerns that I voiced. And yet, I'm even more angry at myself for not having been more careful, not having trusted my gut, I got carried away with the illusion that maybe I was in the final stretch run and I could handle such treatment to finish off this thing. Basically, I got impatient (after 10 years of hell who wouldn't be!), and I am most truly paying the price with this epic crash. But I had no idea this kind of setback was even possible, so I have to rein in my frustrations, and focus my energies on trying to regain my baseline and surviving this struggle. But I realize that I always have to trust myself, be smart, be careful, go slow. In the end, the ideal situation would be to be find a doctor who has at least 10 years experience treating cases like my own. Sometimes I wish I had more options for pain relief. But given the nature of my pain, I know that pain killers are a very dangerous path, and that would open a pandora's box that I cannot deal with. I cannot afford to add another problem to my health woes, and my intuition is that if I get on the pain killer bandwagon, I'm going to be in big trouble. They might be effective temporarily, but eventually their effectiveness will wane and I will be left with a serious dependency issue. So I have to manage my pain as best I can. I do a lot of heat therapy, including baths, dry sauna. For some reason these things give me a bit of relief from my body. The other psychologically difficult thing is worrying about not being on treatments for so long. I worry about the underlying illness progressing and I know my doctors worry about this too. Especially given the fact that there is a strong possibility these sorts of infections play a role in a multitude of neuro-degenerative diseases. That's what makes me scared and impatient, the worry of not treating and being held back by my body eats away at me. Ultimately, I have to look at the cost/benefit, and right now, the cost of not treating is not ideal but it is my only option, as the benefit of stabilizing my body is far superior to resuming treatments and spiraling my body back into a hole of pain I cannot manage. I'm so grateful to have my family. Without them I would be toast. I am loved, and have emotional, financial, loving support. I always prided myself on trying to be independent, and it has been very humbling to have to need and ask for so much help. To admit one's weakness is a difficult thing. To admit one's fears, how scared one is, that is also difficult, and my family kindly listens and helps me through my tribulations. I wish I could be doing more for my family, and not having to suck up their emotional and financial resources. At this stage in my life, I should be the one helping my parents, not the other way around. I do believe I can get better. Obviously I sent my body into a tailspin, and I need to recover and then resume treatments and try to go for incremental improvements. There is no fast way around this for me. I wish I had clearer answers, a clearer treatment path. When the pain is gripping for days, weeks on end, I start getting so scared, unrelenting pain begins to break me down. And on the days where that pain has tempered, I feel stronger, more hopeful, and I feel a bit more like things aren't spinning out of control. I know I will keep on my journey of healing. Do I know the exact path? do I know the exact endgame? no and no. But I know I can improve and I have to focus on that. I have improved things via antimicrobials but have had to go slowly and carefully, so hopefully I can resume that tact and keep recovering my health slowly. I never thought this would be my path. But in a sad way, getting better from this thing has become my life's work. I hope I can learn from it, and I hope I can keep finding the light and find ways to transcend this thing. But in the difficult moments, and when I'm in pain, I repeat a phrase a buddy of mine suggested: "May God grant me the strength to make it through the day." I like it.

Carter is an out-going 9 year old boy from Raleigh, NC. Carter lives with his mom, Crystal, dad, Josh, brother, Ethan, dog, Cassie, and hamster, Charlotte. He loves playing hockey on his roller skates in the house and tackle football with his little brother in the living room. Carter has Fanconi Anemia(FA) and was diagnosed at 13 months old. He was born with two holes in his heart, a hypoplastic thumb and missing right kidney. Right after Carter’s third birthday, his bone marrow began to fail. Carter went through 5 days of chemotherapy and radiation, and then he received his “new blood”. He had a matched, un-related marrow donor (bone marrow transplant) on February 5, 2010. Since his transplant, Carter has done well. He has had numerous surgeries, hospitalizations and setbacks, but always comes back with a smile!

Maya is Ronan's mother and she contributed two incredible quotes that remind her of her son. She was generous to share the story behind each of these special sayings with us. All good things are wild and free is my favorite quote by Henry David Thoreau. It stands for everything that Ronan was in his short little life and it is something I try to carry on for him in my life here. I try to live as wild and freely as possible knowing that tomorrow is never guaranteed. Everyday we are here is a gift and should not be wasted. "You keep me safe, I'll keep you wild" is another one of my favorite quotes. In my heart, I'm keeping Ronan safe forever. In turn, he is reminding me to keep going, to keep knocking down doors, and to keep fighting cancer for kids the non conventional wild way that he would want me to.


The Comeback Kids

November 19 - December 02

This campaign we have asked you what art you'd like to have revisited. We also asked each artist if they'd like to update the causes.

Justin would like his penguin art to raise money for The International Down Syndrome Coalition:

The International Down Syndrome Community (IDSC) is the foremost social media organization in the Down syndrome community. We foster the dignity and respect of people with Down syndrome with a focus on connecting, supporting, and empowering individuals with Down syndrome and their families from diagnosis and throughout life by providing online communities, collaboration with local and national partners, and connection to local support through regional events.

Logan's Dudebag design back out to help him with his needs. Half of the proceeds will go directly towards his medical bills and help him save a little for the future as he cannot find work.Team Logan:

As some of you know, Logan was recently diagnosed with a thyroid disorder. Medication is now a part of his daily life, and exercise is going to be a huge part of our routine moving forward. We are lucky enough to have an empty space in our home that we will be converting into Logan's fitness room, and it will be customized to his needs, likes and limitations. He has spinal issues, and therefore will be working with some specialists to make sure everything is perfectly geared toward his health and safety.

Maddie's has chosen to have her Smile artwork help the Shriners Hospitals for Children - St. Louis:

Every child dreams of being in the driver’s seat. But not all children travel the same road. For children faced with physical challenges, fulfilling the promise of a brighter tomorrow can be a long and bumpy ride. See how the specialists at Shriners Hospitals for Children — St. Louis are determined to put children in the driver’s seat and set them on the road to independence.

Since 1924, Shriners Hospitals for Children — St. Louis’s board-certified surgeons and staff have been providing high-quality pediatric orthopaedic care to children, regardless of the families' ability to pay. Our hospital and clinic specialize in treating children with orthopaedic conditions in an environment designed to put children at ease. Every member of our team, from surgeons and therapists to nurses and prosthetists, work together to ensure the best course of treatment for each patient.

The St. Louis Shriners Hospital proudly serves children from all over the U.S. and the world, but our primary catchment area is the nine states of Missouri, Illinois, Indiana, Kentucky, Tennessee, Arkansas, Oklahoma, Kansas and Iowa.

Nick has asked that his Triforce raise funding for Make A Wish Foundation: Hawaii:

Every year, there are about 100 keiki(Hawaiian for children) in our islands newly-diagnosed with a critical illness. It is our vision to grant the wish of every eligible child. Learn about the transformative power of a wish and why medical professionals are prescribing it as good medicine.

We grant life-changing wishes to children in Hawaii with critical illnesses. Many of our wish kids overcome their illnesses and lead long, healthy lives.
Though we are part of the world's largest wish-granting organization, we operate locally as an independent 501(c)3. Monies raised in our state stay in our state.
We are headquartered in Honolulu with a staff of 30, and we rely on our 400 statewide volunteers to make wishes happen.
Unlike most nonprofits, we are 100% privately funded, which means wishes are entirely backed by our community.
We are among the busiest chapters in the nation with the unique privilege of sharing our beautiful islands with more than 1,000 families on wishes to see Hawaii each year. We engage more than 200 hospitality businesses to fulfill these incoming travel wishes.

Sean's Sun design will support The Hawk Shop at Higgins Middle School in Peabody, MA:

HawkShop at Higgins Middle School is a partnership between caring adults, students with disabilities, and typically developing peers formed with the mission to engage in social, vocational, and community based experience with a positive, goal oriented focus that will meet a need within our school community and support our school values by providing students-in-need with access to clothing, toiletries, and staple food items. All items are donated by the community and offered free-of-charge to those students.

HawkShop was started by a group of educators who recognized a need within our school community and found inspiration in other successful school based and local programs. We recognize that students have basic needs that must be met, and meeting these needs can improve students’ readiness for learning, attendance, social and emotional well-being, and confidence.

Higgins Middle School is the largest middle school in New England, serving all middle school-aged children in Peabody, nearly 1,500 students in grades six through eight. Student participants are members of our Higgins Middle School community. Special needs students learn vocational and social skills as they stock and maintain the shop alongside of their typical peers. All are students who exhibit our school’s values and who are motivated to enhance their own learning and social engagement as well as to support their peers.

Thank you all for your support and your votes for the art chosen for this campaign!
  • Artist

    Justin

    38 yrs old

  • Artist

    Logan

    25 yrs old

  • Artist

    Maddie

    14 yrs old

  • Artist

    Nick

    16 yrs old

  • Artist

    Sean

    22 yrs old

Justin is 38 years old and works at a wood shop in a supported vocational program in Tucson, Arizona.  Justin loves to exercise, draw pictures, listen to music, and anything fireman related.  He is close with his family (especially his uncles!) and enjoys spending time with them while rock climbing and canoeing.  Justin has a dog, Koty, and two cats, Jacob Marley and Jordin Sparks.  Justin has a diagnosis of Down Syndrome with Autism Spectrum Disorder but his disability certainly does not define him!!

Logan is a 25-year-old young man who is living with Hashimoto's and developmental disabilities, including Apraxia. He enjoys riding his trike, bowling, fishing, playing basketball and helping with his many, many animals. His family likes to consider him challenged not limited, and you can find out more about him through Logan's mom, Allyson, chronicles their lives on her Facebook page, The Crumb Diaries.
Logan's designs are raising money for Logan's Fund, a trust fund set up to be set aside for Logan should anything happen to his parents.    

My name is Madelyn Hubbs and my close friends call me “Maddie.”  I am 14 years old and my hobbies are therapeutic horsemanship, swimming, and knitting.  I live in St. Louis with my dad, mom, younger brother (Kyle) and our cat Elmo.  I was born without my left arm and I received my first prosthetic arm from St. Louis Shriners Hospitals for Children before my first birthday. St. Louis Shriners Hospitals for Children have continued to provide me prosthetics, show me ways to do things with one hand, provided strengthening exercises and monitor a slight curvature in my spine. My absolute favorite Shriners event has been Hand Camp.  I went two years in a row and I met many new friends like me and I got to try rock wall climbing and archery.  I always love going to St. Louis Shriners Hospitals for Children.  Everyone is so nice and many of the staff there are like family to me.  One thing I remember about going to my favorite hospital when I was younger, is I would always receive a toy or stuffed animal.  I decided a few years ago to collect toys and other items kids would like to have while visiting the hospital and as of this year I have donated over 1000 items.  A few years ago I became an Ambassador for St. Louis ShrinersHospitals for Children. As an Ambassador I have gone to schools in our community to talk about limb differences, prosthetics, and bullying.
I believe anything is possible.  I tell people, “I can do anything you can do, I just might do it a little differently.”  I am positive, have a great sense of humor about my limb difference and I am motivated to try anything and show others if I can do it, you can do it.  I taught myself how to put my hair in a ponytail, braid my hair, tie my shoes, knit scarves and hats – all with one hand.  I have recently made videos of these one handed tasks and placed them on YouTube and myShriners Facebook page, hoping to help others who are living with one hand like me.  As a result I have connected with people all over the world.  I am very excited to be able to help raise money for my favorite place, St. Louis Shriners Hospitals for Children. They have given so much to me and my family and I want to show my appreciation and give back.

Nick was an incredible, inspiring young man who showed thousands of people what it was like to truly live life to the fullest. At 14, Nick was diagnosed with Osteosarcoma after complaining of pain above his knee for a few weeks. Over the next two years, Nick underwent many surgeries and battled through chemotherapy with a positive, determined attitude every step of the way. Unfortunately, the tumors were continuing to grow and in late summer of 2014, Nick and his family made the decision to stop treatment. Through the next few months, Nick crossed items off of his bucket list with fervor and spent his days with his loved ones bringing smiles to the face of all those he touched. On December 30th, 2014 Nick passed away.
Half of the proceeds from apparel sold with his tattoo in this campaign will benefit the homeless and help the memory of Nick live on! People will continue to get Nick'd!

This is Sean Bowler. Sean is a twenty-two-year-old young man. Sean loves his family and friends. He shows his appreciation for those that care for him every day.
Sean was born at twenty-seven weeks. As he grew, Sean was not meeting his milestones. It was clear that he would need special education services. During his younger years, we were trying to find a diagnosis for Sean in hopes of better understanding his needs, development, and challenges. At six-years-old, Sean was diagnosed with FG Syndrome. With this diagnosis, our family started to make connections with other families with the same diagnosis. Sean’s geneticist at the time was not fully convinced with the diagnosis and after some time we started another search for a diagnosis. In the spring of 2016, Sean was diagnosed with Xia-Gibbs syndrome through genetic testing. At the time of his diagnosis, Sean was the fifth person with a confirmed diagnosed through genetic testing and the twentieth person overall.
As of his twenty-second birthday, Sean began attending an adult day program at Coastal Connections in Amesbury, Massachusetts. This program serves special needs adults of all ages and abilities. Sean refers to Coastal Connections as his “work.” This wonderful program provides academic and vocational opportunities for clients. Over time, Sean will have the opportunity work out in the community.
At home, Sean has his family. He is the older brother of two sisters whom he adores, Abby and Kelsey. Sean gave himself the nickname, Superman. To his family this seems very appropriate. Sean has recently had his third spinal fusion surgery. Currently, Sean is recuperating from this surgery and anxiously awaits his return to work. Feel free to follow us at https://www.facebook.com/Theboysmb/


Classics Collection

November 05 - November 18

We brought back fifteen of our classic designs and wanted the attention to be on them! So take a trip down memory lane and rediscover some great designs, artists, and causes.
http://www.papercloudsapparel.com/product-builder/?style=55642&artwork=6488&pa_color=neon-green&pa_size=m&category=classics
  • Artist

    Paper Clouds

Any time you purchase a Paper Clouds Logo design, 50% of the proceeds go directly to the charity of that campaign!!


Guitars for Good II Group 3

October 22 - November 04

School of Rock: New Braunfels

School of Rock New Braunfels’s music teachers are experienced musicians devoted to helping students attain musical proficiency. From singing to drums to guitar, our New Braunfels music instructors inspire and teach students to perform live.

SOS Children's Villages USA

SOS Children's Villages builds loving, stable families for orphaned, abandoned and other vulnerable children in 135 countries, including the United States. We are the largest non-governmental organization dedicated to the care of orphaned and abandoned children, with 70 years of expertise.

Our comprehensive approach — preventing child abandonment, offering long-term care for children in need and empowering young people with the resources to reach their full potential — transforms the lives of millions of children and families worldwide each year.

Muscular Distrophy Association: Austin Texas

Families are at the heart of MDA's mission. We wake up every morning to create more hope and answers for families living with muscular dystrophy and related diseases that take away physical strength and mobility. We do this by finding research breakthroughs across diseases, caring for kids and adults from day one and empowering families with services and support in hometowns across America.

Down Syndrome Association of Central Texas

Our Vision is a world in which all members, including those with Down syndrome, are accepted, valued for their uniqueness, respected for their abilities and contributions, and assured the opportunity and choice to create their own path to fulfillment and success.

Our Mission is to provide education, support, and resources to individuals with Down syndrome, their families and professionals and the community while building public awareness and acceptance of the abilities of individuals with Down syndrome.

Cook Children's Medical Center

Cook Children’s Health Care System is a not-for-profit, nationally recognized pediatric health care organization based in Fort Worth, Texas.

Our Promise: Knowing that every child's life is sacred, it is the promise of Cook Children's to improve the health of every child in our region through the prevention and treatment of illness, disease and injury.

In 2005, after their own personal experience, Justin and Casey Frazell had an idea to combine their love for red dirt music with their passion to help premature babies. Thanks to the advanced care provided by Cook Children's, the Frazells are able to watch their 11 and 14 year old children live healthy, happy lives.

Thanks to advances in neonatal medicine, technologies, excellent outcomes and donor funding, Cook Children's neonatal program is nationally recognized and state certified at the highest level. As the only Level IV NICU in Tarrant County, Cook Children's has the technology and expertise to treat the sickest babies with the most difficult and complex diagnoses.

  • Artist

    Julia

    16 yrs old

  • Artist

    Griffin

    15 yrs old

  • Artist

    Nick & Presley

  • Artist

    Gunter

    13 yrs old

Julia is in 10th grade at West High School in Madison, Wisconsin. An honor roll student with autism, Julia loves her classes in pottery, computer illustration, choir and earth science. Her favorite way of working on social skills is cheering for the West High Regents. After school, she likes to watch Voltron Legendary Defenders and draw the paladin, Pidge.

Griffin has a passion for classical music and retro video games. He also loves playing the piano, swimming, and making art. Because of his Aspergers diagnose, he views the world in a unique and amazing way. He has difficulty with the concept of death and he loves animals, so he came up with the phrase "Pick two flowers with one hand" to replace "Kill two birds with one stone." He hopes to one day be a video game designer and composer. There is no doubt he will accomplish anything he puts his mind to! Griffin's mom, Missy, started a Facebook page What Will This Day Bring? that is dedicated to her blog about life with Griffin.

Presley is 17 years old and has been a student at Beyond Autism for three years. Our resident artist, you will often find Presley drawing at her desk. She loves all things Disney and frequents Disneyland as often as she can. Presley enjoys Lady Gaga and loves to dance!

Nick is 16 years old and loves to make others happy. His favorite song, Three little birds by Bob Marley, truly captures Nick’s easy going approach to life! Nick loves skateboarding, scootering and plays baseball at Miracle League. He has been a student at Beyond Autism since its inception in 2014.

Gunter was diagnosed at age 4 with Asperger’s Syndrome, a condition related to Autism. Although quirky, Gunter is loved by many due to his caring heart. In elementary school, Gunter helped found an anti-bullying club to help encourage his peers to embrace their differences. His love for helping others also led him to create a lemonade stand over the past summer with over half of his proceeds being set aside for charity, a concept that has been adopted by his younger brother now as well. Gunter and his brothers also love to provide meals to the homeless when possible and that is why Gunter has elected to attempt to raise money for Cloud Covered Streets. Helping another human off of the streets is Gunter’s goal for 2017.


Guitars for Good II Group 2

October 08 - October 21

American Aquarium and Christopher's USA Fish are raising money for:

Tammy Lynn Center

Founded in 1969, Tammy Lynn Center for Developmental Disabilities empowers families and enriches the lives of children and adults through education, community and support services. We provide hope and opportunities for individuals to learn, live and grow to their fullest potential.

Dalton Domino and Jaxon's guitar art are collecting money for:

Heartstrings Foundation

Our Goal is to help heal hearts through the power of music & our main focus is working with veterans and children with special circumstances.

Music is an extremely powerful tool we use to express Love, Unity, Heartache, Happiness & Strength. Music gives power to the powerless, courage to those living in fear, the broken the ability to put the pieces back and most importantly heal those with broken hearts!!

Fans can select from a list of Artists and make a donation to Heartstrings Foundation through our donation packages.

In return receive a meet and greet with the Artist they have selected. During the meet and greet fans will be given an autographed guitar. An additional guitar will be given to a Veteran or Child on behalf of the Artist and Fan.

Sarah Ross and Griffin's dog artwork is in support of:

Wilderwood Service Dogs

Wilderwood specializes in providing service dogs specifically trained to handle the challenges of Spectrum Disorders and other neurological impairments.

Mike and the Moonpies and Tommy's tour bus art is raising money for:

The Children's Heart Foundation: Texas Chapter

The Children's Heart Foundation, Texas Chapter has been developed by a group of loving and dedicated moms, whose lives have been dramatically changed with the knowledge of their child and/or children’s new medical needs. We hope that with this new information, fellow parents with “heart children” will still find a sense of hope and encouragement.

We encourage family, friends and those interested in joining us in the fight to change our children’s lives can join us here at The Children’s Heart Foundation, Texas Chapter.

Courtney Patton and Griffin's "I just need a shove" design is collecting for:

Rebuild Texas Fund

Hurricane Harvey was an unprecedented natural disaster that requires an unprecedented effort in recovery. Your contribution will help people, organizations, and businesses recover and rebuild in the impacted communities in Texas. The funds raised will be fully deployed by the end of 2019.

We all thank you for your support!
  • Artist

    Jaxon

    14 yrs old

  • Artist

    Griffin

    15 yrs old

  • Artist

    Tommy

    6 yrs old

  • Artist

    Christopher

    31 yrs old

Jaxon "Jax" is a 14 year old high school freshman from Muenster, a small North Texas town with German roots. Jax has many hobbies which include building Lego architecture inspired by places all around the world, playing video games on his Nintendo Switch, drawing, baking, as well as reading comic books. Jax also loves playing and spending time with his dog and buddy, Smokey. Jaxon has been raised to spread kindness and accept others for their differences. He knows that God makes everyone different and that everyone has different talents. When he grows up, Jaxon would like to use his art and design talents to become a computer animator.

Griffin has a passion for classical music and retro video games. He also loves playing the piano, swimming, and making art. Because of his Aspergers diagnose, he views the world in a unique and amazing way. He has difficulty with the concept of death and he loves animals, so he came up with the phrase "Pick two flowers with one hand" to replace "Kill two birds with one stone." He hopes to one day be a video game designer and composer. There is no doubt he will accomplish anything he puts his mind to! Griffin's mom, Missy, started a Facebook page What Will This Day Bring? that is dedicated to her blog about life with Griffin.

Tommy is six years old and he is much like any other six year old. He loves cars, trucks, trains and planes and he loves to play outside. Although he is much like any six year old boy, he is also very different. He was born with 22q11.2DS – 22q for short. 22q is a partial deletion of the 22 chromosome and it affects every carrier differently with a wide range of symptoms.
In Tommy’s case, he was affected with a heart defect, a cleft lip & palate, a laryngeal web as well as low muscle tone and developmental delays. He has been tube fed the majority of his life and he’s slowly learning how to eat on his own. Because of his many challenges, he has a very busy schedule. He has been receiving therapies multiple times a week since birth and he has had five surgeries to date. He currently goes to developmental school every weekday. In addition, he receives 3-4 therapies a week at home after school. He is very busy, but he continues to work hard like the super hero he is.
Although he has so much on his plate, Tommy is one of the happiest and easiest going kids I have ever met. He loves the movie Wall-E and his favorite past time is playing with his planes. He loves to snuggle and his best friend is his four year old sister, Rosemary. Tommy has a special way of making people in his life happy and he is truly an inspiration to everyone he meets.

Christopher a polite, loving 31 year old who was born with Down Syndrome. Christopher’s gentle soul loves spending time with his family. He is very close to his parents, two beautiful sisters and his brother in laws. Christopher grew up living in the country and was raised on a dairy farm. He has a great love for horses and cows and says “ it’s in his blood.” Christopher takes pride in the act of chivalry, opening doors for men and women of all ages, pushing up chairs and insisting “you” go first, with a big smile on his face. Christopher’s greatest love’s is to dance and listens to a variety of music from Mozart to metal, country, jazz and blues. Christopher will sit for hours playing the piano and enjoys drumming with his dad who is a musician. He also enjoys drawing, painting, swimming, bowling and special Olympics. Christopher adores his girlfriend and dreams of getting married some day. He enjoys going out to eat and attending dances with her and that’s where he can be seen, moon walking and doing the splits on the dance floor. Christopher’s favorite occasion is his birthday but not only his, everyone else’s too. He keeps a calendar with friends, family and extended family’s special dates. He believes we are all so blessed to have one more year of life here on earth.


Guitars for Good II

September 24 - October 07

Variety’s Peaceable Kingdom Retreat for Children is an all abilities camp for kids with special needs in Killeen, Texas. At VPKRC, we define special needs broadly, believing that most people have a difference of some sort that requires a little extra support and is a unique part of who they are. Last year, our organization served over 6000 kids from across Texas and beyond.

Through our Summer Camp program, we partner with other non-profit organizations and hospitals to bring together kids who have a shared visible or invisible difference. We partner with Texas Scottish Rite Hospital to host HD1.5 and HD2, a pre-teen weekend retreat and a teen weeklong summer camp for kids with hand differences. By attending camp, these kiddos grow up connected to peers who understand what it’s like for them to navigate their every day lives with a hand difference. Many of these campers are the only kid in their school or small town with their difference or diagnosis, so having friends who look like them and understand what it’s like to live with their difference is life changing. At VPKRC, kids are able to embrace their difference as part of their identity and thrive in an environment that says “Yes, you can. How can we help?”

Amy's Dream Team is a group of volunteers that go to PKRC each spring to help ready the camp for summer camps by cleaning, painting, organizing, building, digging, pulling weeds, doing laundry and/or just about anything PKRC needs. Our group has been going to PKRC for 15 years to volunteer our time, sweat and money to this deserving organization and the special kids it serves. Families work side by side and parents are able to teach their children at a young age the importance of giving to others not as fortunate and how volunteering can bring so much joy to others as well as themselves.

The Graham County Rehabilitation Center is in the business of helping people reach their full potential. We contract with the Department of Economic Security / Division of Developmental Disabilities to support qualifying individuals in reaching their independence goals including employment and residential services. GCRC is the only locally incorporated and locally operated non-profit in Graham County providing services to those with a Developmental Disability. For more information about the services that GCRC provides visit the link above called Programs.
GCRC operates the largest Thrift Store in Graham County. In these difficult economic times, GCRC is able to act as a broker for resalable household items, accepting quality items that are not longer being used, and making them available at affordable prices. This exchange of goods helps to stretch the dollar of local citizens and provides a tax deduction for the donor. The Thrift Store link above provides more information about the GCRC thrift store.
Reduce Identity Theft - GCRC operates the only secure document destruction facility in Graham County. If you have ever had your personal information misused by someone else, you know firsthand the amount of time and expense involved in trying to repair the damage to your reputation and personal finances. It is a relatively small price to pay to know that your personal information is being properly destroyed. The GCRC Shredding facility is capable of shred 100 file boxes per day and will pick up boxes from your location. For more information about document destruction follow the Secure Shredding link.
Help those in need - GCRC workes with many other local non-profits as well as private individuals to help ensure the welfare of all Graham County Citizens. GCRC regularly donates clothing and other household items to families in need, and to other community service agencies as a part of helping them to fulfill thier mission. It is a part of our mission to help not just the members we serve, but thee entire comunity to move forward with hope.

Variety the Children's Charity of Texas and the Peaceable Kingdom Retreat for Children was established in 1984 in memory of Charles Schreiner V, son of Mary Helen and Charlie Schreiner IV and grandson of Daurice and Jim Bowmer. Charles Schreiner V (also known as Baby Charlie) was born with a congenital heart defect, and after a courageous battle for almost a year, he passed away at the age of eleven months. Baby Charlie spent nearly all of his eleven months of life in the hospital and his grandparents wanted to create a place where children could get away from the hospital with their families for a few days and just be a part of nature. The Bowmers started Baby Charlie’s Fishing Camp and they, along with Mary Helen and Charlie, brought children and their parents from nearby Scott & White Hospital to fish on the Lampasas River.

The fishing camp grew, and the Bowmer family expanded and started what is now Variety’s Peaceable Kingdom Retreat for Children on 120 acres adjacent to the Lampasas River. The retreat serves over 5,000 children with chronic illnesses and special needs each year. The children participate in three programs at the retreat: Summer Camp Program, Weekend Program or Environmental Education Program.
Mission: Variety of Texas impacts children with special needs and their families by providing resources and empowering experiences.

American Therapeutic Riding Center or ATRC provides opportunities for people with varying ability levels and physical disabilities to challenge themselves physically and emotionally by setting goals to improve quality of life through equine facilitated therapy.

Founded in 2007 by Kenneth and Vickie Burkett, The American Therapeutic Riding Center (ATRC) is a 501(c) 3 nonprofit organization and a PATH Center Member (Professional Association of Therapeutic Horsemanship). ATRC opened to the public in August of 2008.

Down Syndrome Guild of Dallas
What is the Mission of the Down Syndrome Guild (DSG)? To provide accurate and current information, resources, and support for people with Down syndrome, their families and the community.

What is the Vision of the DSG? People with Down syndrome - valued and included.

Who is Served by the DSG? We serve individuals with Down syndrome, their families, and the community, including educators, health professionals, and others.

In an effort to better support the mission statement of the Down Syndrome Guild of Dallas ("DSG"), which is "to provide accurate and current information, resources and support for people with Down syndrome, their families and the community," all social programming events sponsored by the DSG will be offered to people with Down syndrome and their families. Social event attendees must be active members of the DSG and have a diagnosis of Down syndrome.

What Services Does the DSG Provide? The DSG offers parent-to-parent support to families with new babies, young children, school-age children, and adults with Down syndrome through personal visits, information packets, and social gatherings. A trained Guild member is part of the team at the Down Syndrome Clinic at Children's Medical Center, which provides comprehensive care for children with Down syndrome and their families. DSG monthly newsletters contain information about area activities and services, as well as articles on medical, educational, developmental, and social topics. The DSG has an extensive free lending library with current books and information for members. The DSG hosts an annual conference with nationally recognized speakers that is attended by parents, educators, and health professionals. Each year, the DSG offers a series of seminars to help families with various aspects of life with a child with Down syndrome. Volunteers advocate at every opportunity for greater inclusion of people with Down syndrome in the community. Printed material such as our monthly newsletters and new parent information packets are available in both English and Spanish. Translators are provided at events when requested. Social events, such as our annual family picnic, "Snackin' with Santa," youth, teen, and adult activities provide opportunities for individuals with Down syndrome and their families to socialize in a safe and fun atmosphere.
  • Artist

    Justin

    38 yrs old

  • Artist

    Jayce

    18 yrs old

  • Artist

    Logan

    11 yrs old

  • Artist

    Matthue

    5 yrs old

  • Artist

    Jackie

Justin is 38 years old and works at a wood shop in a supported vocational program in Tucson, Arizona.  Justin loves to exercise, draw pictures, listen to music, and anything fireman related.  He is close with his family (especially his uncles!) and enjoys spending time with them while rock climbing and canoeing.  Justin has a dog, Koty, and two cats, Jacob Marley and Jordin Sparks.  Justin has a diagnosis of Down Syndrome with Autism Spectrum Disorder but his disability certainly does not define him!!

Jayce was diagnosed with High-Functioning Autism when he was 3 years old, while his father was deployed in support of Iraqi Freedom. He recently turned 18, and though he is nervous about adulthood, he has really come into his own. He wants to go to college to get a degree in Art and Computer Animation, and work in animation. His short-term goals are to get through high school and to get his learner's permit, and then driver's license. He loves all animals, but especially his cats, Wheezy and Cleo. He also enjoys comic books, Yu-gi-oh, anime, and movies.

This is Logan Schultz! He is 11 years old and in 5th grade. Logan loves to play baseball, football, basketball and video games. He drew this masterpiece from the outline of his left hand print. Logan was born with complex syndactyly in which his fingers did not fully separate on his left hand. His unique difference makes him even more special. From a very young age, Logan has had the confidence, determination and joy for life to never let anything slow him down. Logan especially loves attending Hand Camp where he spends one weekend with all his friends that share hand differences too. Hand Camp has done wonders for Logan, his family and thousands of others. May we all embrace our differences, whether visible or not, and be proud of our unique selves!

This is Mathue, a very special 5 year old boy, and he created art for his favorite Texas country musician, Koe Wetzel. Mathue loves spending time with his family, playing games, playing drums and guitar, spinning, drawing, and especially swimming. He has non-verbal Autism and uses an iPad to communicate, which allows him to show everyone he meets how very smart, curious, sweet, and funny he is.

Jackie has been an Arizona resident since 1975 and a resident at The Centers for Habilitation (TCH) since 1997. Art has been an important part of Jackie’s world for a long time, and she has become an excellent representative of and eager participant in TCH’s Unique Boutique, a program in which she and some of her peers with developmental disabilities create artwork for sale onsite and in community markets. Jackie is known for her careful attention to detail, and for the joy she takes in her finished products!

In addition to her participation in the Unique Boutique, Jackie loves to shop, eat out, and advocate for herself and others with disabilities. Her friendly and thoughtful personality is readily evident – when she isn’t busy, she can often be found making gifts and cards for the people she loves.


Elena & Mark Help the Homeless

September 10 - September 23

The art for this campaign is depicting the amazing couple that met on the TV show, Big Brother: Mark Jansen and Elena Davies. They met when they were both cast on season 19 of Big Brother, they now have bought a house together and are very much in love. They both have a HUGE heart for the homeless and when they heard about us not receiving the shower trailer, they both wanted to do something to make sure the homeless get a free and safe place to shower, wash their clothes, get haircuts, and get employment working on the trailer! Elena has been a big supporter of the helping the homeless and wants to help Cloud Covered Streets. Elena was crushed to hear we didn't get the shower trailer we had been told we were being given, and she wants to help us make sure we have enough to build our own.


Cloud Covered Streets came about from me just driving around Phoenix and seeing those that live on the streets wearing dirty clothes, often with holes and tattered. I thought to myself that I own a clothing company and I had to do something to help. So I went and ordered a ton of shirts, put the Paper Clouds Apparel logo on them (that is my clothing business) and was going to hit the streets and pass them out. Then I started thinking more on the idea and wanted to give these people more than just a shirt, I wanted to give them all a handwritten letter of hope. Who knows how long it has been since any of these people received anything like that. So I posted on the Paper Clouds Apparel social media pages and soon letters were pouring in from all across the country. About the same time I was hanging out in the tattoo shop run by my good friend Bee DeVille as my friends Andrew Cooper and Shane Britt were getting new tattoos. We got onto the topic of how we were all men who believe in God and a higher power but we also tend to cuss, fight, and carry on from time to time. The saying “I love Jesus but I cuss a little” came up. At that moment I decided to put that phrase on a shirt and surprise a bunch of my friends with these shirts at a show they were having at RockBar, my buddies are country musicians.

At the show I was passing out shirts and people started approaching us wearing the shirts and asking where they could buy one. A light bulb went off in my head and I realized I could sell these shirts and 100% of the proceeds would go to clothing and helping the homeless. At this same concert I was approached by a young lady named Brie Marok and she told me that she wanted to help with passing out the shirts and in any other way I need it. So a week later we went out on our first mission to look for those in need and to get them a shirt and a letter of hope. One of the first people we encountered was a man we saw in a park and at the time he had no shirt on. We approached him and earned his name was Daniel and that all his clothes had been stolen a week ago. So when we gave him a shirt, that was literally his only article of clothing. Daniel put his head in his hands and started to cry tears of joy when we gave him a new shirt. It was a moment I will never forget and gave me validation that what I was doing was important.

-Robert Thornton
cloudcoveredstreets.org
  • Artist

    Griffin

    15 yrs old

  • Artist

    Justin

    38 yrs old

  • Artist

    CCS

    20 yrs old

Griffin has a passion for classical music and retro video games. He also loves playing the piano, swimming, and making art. Because of his Aspergers diagnose, he views the world in a unique and amazing way. He has difficulty with the concept of death and he loves animals, so he came up with the phrase "Pick two flowers with one hand" to replace "Kill two birds with one stone." He hopes to one day be a video game designer and composer. There is no doubt he will accomplish anything he puts his mind to! Griffin's mom, Missy, started a Facebook page What Will This Day Bring? that is dedicated to her blog about life with Griffin.

Justin is 38 years old and works at a wood shop in a supported vocational program in Tucson, Arizona.  Justin loves to exercise, draw pictures, listen to music, and anything fireman related.  He is close with his family (especially his uncles!) and enjoys spending time with them while rock climbing and canoeing.  Justin has a dog, Koty, and two cats, Jacob Marley and Jordin Sparks.  Justin has a diagnosis of Down Syndrome with Autism Spectrum Disorder but his disability certainly does not define him!!

This Cloud Covered Street design has been designed by a very special person that prefers to remain nameless. This piece helps broadcast one of the core messages of Cloud Covered Streets, to Be The Good!


Poets Who Help

August 27 - September 09

This campaign we have a group of incredibly talented writers from Instagram who all have decided to help raise money for charities by donating their poetry for us to print on our merch! The charities are as varied as the artists, and they all support great causes.

Tiffany Aurora:

Tiffany has partnered with us to raise money for United Angels Foundation.

The United Angels Foundation (UAF) is a non-profit, parent-to-parent support group. The primary mission of the foundation is to support parents and families of children with special needs. We do this through three main focuses: Interaction, Education, and Resources. Examples of these include: newborn visits; parent lunches; online chat forums; youth and family activities; parent education seminars; and much more. As our name indicates, we view these special children as Angels. UAF believes that the most effective way to support these Angels is by supporting the parents and guardians who are raising them. We believe that creating a collaborative and inclusive environment will ultimately help to promote the healthy development of the individual child. Parent- to-parent support can be the key to helping a new parent understand and embrace the opportunities and challenges a child with special needs brings into their life.with special needs through three main focuses: Interaction, Education, and Resources. Examples of these includes: newborn visits, parent lunches, online chat forums, youth.

Vivi Dale:

Vivi Dale has collaborated with us to raise money for Autism Society: San Diego

The Autism Society San Diego County is a non-profit organization which originated in 1966 as the National Society of Autistic Children. It served to unite and inform parents on new revelations concerning intervention therapy.

Today, the Autism Society San Diego serves as the voice and resource of the local autism community. The Society members include autistic individuals and their parents, relatives, friends, advocates, medical professionals and educators throughout San Diego County and beyond.

Our Board of Directors has, throughout its extensive history, been comprised of a diverse mix of both autistic individuals and their family members as well as professional experts in the field of autism. Every Board Member regardless of background or position serve the Society on a volunteer basis.

​As an affiliate of the national organization, the Autism Society of America, we share in their mission of improving the lives of all affected by autism by promoting meaningful participation and self-determination for autistic individuals and their families. We work diligently to ensure we support and amplify the voices of autistic individuals within our organization and throughout our community. For autistic individuals in need we offer extensive financial support for our programs and membership.

m.firechild:

M.Firechild has allied herself with our cause to support those in need, her chosen charity is Jessica's House

Jessica’s House provides support in a safe place for children, teens, young adults and their families grieving a death because no one should grieve alone.

We provide a safe, caring place where you can share your story, and we create an environment that enables you to find your own path through your recovery process. We’re here to let you know that through it all, you are never alone.

Jessie Michelle:

Jessie Michelle has teamed up with PCA to raise money for Just People, Inc.

In the fall of 1995, after many years of volunteering and working with programs that benefited adults with developmental disabilities, Becky found a need for the group of high functioning adults who fell between the cracks to have a social opportunity and a safe choice in a place to live. Everyone with varying disabilities seemed to be pooled together in programs where abilities were not being used and the consumers who were high functioning were not given the opportunities that they had the ability to accomplish. Consumers also seemed to have providers of services from several different programs that did not work together as a team to develop the best plan for the consumer. Like most people, if you have a problem at home it effects you job, if you have a problem at work it effects your ability to socialize, if you are disabled you ability to socialize is limited because of monies, not being able to drive, not being able to read, not understanding cost and being depended on family to get you involved or out in the community. Then there is the population of people who have no family to help them with these areas of their lives.

The program was meant to be Becky’s way of helping a small group of adults she had worked with in several other programs but very quickly became one of the largest programs in Georgia. After all, this one had a friend that needed help, his family had a family that needed help, my neighbor was looking for services and so on and so on. Very quickly a program that was run out of her home for 15 people had grown to where it is today (2014) with over 250 consumers, 68 staff, 8 buses, 21 vehicles, 20,000 feet of office space and day services, an Independent Living Setting which includes 2 apartment complexes that house primarily adults with DD, Mental Illness or Head Injuries, a Thrift Store that provides job skills training and furnishings for apartments, a Job Development Program, a Sports Program, a family support group (“Just” Families), a Consumer Rights Committee, a Board of Directors and a Day Program. The Social Program, which was the first program, provides opportunities for people to get out into the community doing all the things people do: movies, sports events, concerts, weekend trips, vacations, fairs, go out to dinner, meetings, clubs and parties. These activities are every weekend and are done in small groups or large groups and most important with friends and support people.

“Just” People has had 5 weddings since inception which meets an Emotional Need that so many people have; someone to love and share life with. Becky found while growing up with a parent with a Mental Illness that loneliness was the reason her father wasn’t a success in society’s eyes. His disability kept him from driving and working. Family and neighbors treated not only him but the whole family different.

Becky feels her ability to understand her consumers and their family’s needs are because of her growing up years. She raised her 3 children with acceptance, respect and love for people who are different. All 3 children, their spouses and their children have been involved with “Just” People to so degree. In fact, when meeting most of the group you will hear,” Becky is my second mom.” Putting all services under one umbrella has proven to be the key to much of the success of “JP”. A team is developed that works together to make sure all areas of the individual’s lives are on the same page. The pieces are in place to provide a safe environment to live, support services that meet the needs of the individual, a feeling of family and friends, and the attitude around the program is: BE PROUD OF WHO YOU ARE!

Caroline White:

Caroline White has shared her journey with us all, and now she is sharing her art to raise money for Beyond Autism.

Our attitude here at Beyond Autism is simple. We are all here because we want to improve our students' lives and know that it takes a team approach. Although we all possess different skills and abilities, it’s our compassion and desire to enhance their lives that allows us to work synergistically.

Our qualified team members possess the technical competencies necessary to teach children diagnosed with autism spectrum disorders. In addition to extensive ABA training and experience, our team will receive quarterly in-services, including non-ABA based training. “Always a student” is our mantra and that applies to our team members too. We will strive to support the continued growth of our team through pertinent educational opportunities.

Our commitment is to our students, their families and our team members. We are driven to ensure that Beyond Autism grows smartly with an exceptional work ethic and high energy that will ensure its longevity.
  • Artist

    Tiffany Aurora

  • Artist

    Vivi Dale

  • Artist

    m.firechild

  • Artist

    Jessie Michelle

  • Artist

    Caroline White

Tiffany is a wonderful artist, writer, and poet on Instagram. You can find her work at @t.aurora.poetry.

Vivi Dale is an amazing writer and poet on Instagram, you can find her work at @vivi.dale.

Firechild has a fire in her heart for poetry and helping out those in need. She has allowed us to use one of her works to support a charity of her choice and we are happy to have her as a collaborator! You can find her work at @m.firechild.

Jessie Michelle has a wonderful way with words and photos. She is an author, artist, poet, photographer, and so much more. You can find her work at @_jessie.michelle_.

Caroline White creates art with her words; her poetry is raw, and emotional. She shares her journey with us all, you can find it at @cwpoet.


Bacon & Juice Boxes for POAC

August 13 - August 26

In this campaign the star of the show is: Eric. Now navigating his teenage years, he still surprises us daily. The days aren’t always easy. We try to remember the happy and survive the sad. We are blessed with the greatest extended family on the planet. Without their help our family may have crumbled a long time ago. It definitely takes a village.

We love getting to share our journey with all of you — we lovingly refer to as our “Bacon Bits.” It’s like having an enormous super secret and very special extended family. Thanks for sharing your lives with us.
The “Bacon” Family www.baconandjuiceboxes.com

Proceeds will be donated to:
POAC Autism Services

POAC is dedicated to helping children and adults with autism achieve their fullest potential by providing quality education, support and recreation at no cost to participants.

POAC provides free training for parents and educators; free recreational and support services to children and adults with autism and their families; and free training for police and first responders which, we are proud to say, has saved the lives of children with autism all over New Jersey.

Additionally, POAC supports ongoing quality research and promotes legislative issues that impact those with autism and their families. POAC is meeting the needs of those with autism in a very real way every day.
www.poac.net
  • Artist

    Anna & Eric

    14 yrs old

Anna Turning is a 17 year old full time student and competitive gymnast. She has grown up along side her 14 year old brother, Eric who was diagnosed with autism at age 2.5. She has been involved every step of the way, and has been his best teacher and therapist and also is his biggest fan. She didn’t grow up with the typical sibling experience, and many times has had to make sacrifices about her own wants and needs for the sake of her brother. She is wise beyond her years and has become a vocal advocate for autism awareness with her peers. She regularly volunteers in programs or initiatives for special needs children such as: gymnastics classes, buddy programs and even at therapy centers.

Eric’s favorite place on the planet is Sesame Place- and he loves hugs from his friends: Cookie Monster, Count, Bert and Ernie. At home, Eric’s favorite thing to do is ride his hoverboard. He loves water slides, and jumping waves in a pool or ocean. He just graduated 8th grade and has moved on to a new “high school” for special needs children.

You can read more about the family’s journey at Bacon and Juiceboxes or “Bacon and Juice Boxes” facebook page.


Brendan’s Bucket List

July 30 - August 12

This campaign is raising money for Brendan "Rare Heart" Davies. At two Brendan required a heart transplant, and then developed cancer which he beat, only to recently be diagnosed with a terminal lung condition. All proceeds will go to help Brendan's family give him the quality childhood that he has missed thus far.

Brendan's Story

Brendan is a very unique young man. He is a sweet little boy in the body of a very old man. He was diagnosed with ostial atresia of the left main coronary artery and endocardialfibroelastosis (EFE) when he was 2 1/2 months old. He had his first open heart surgery at 3 months old. He has been through a total of two CABG bypasses, a stenosis repair and ultimately required a heart transplant just before he turned 2 years old. He has had five major heart attacks and has had many smaller events. He also has an unspecified form of dwarfism, chronic lung disease and chronic kidney disease. During the summer of 2017, he spent his whole summer break being tested and they found he acquired post transplant lymperoperative disorder (PTLD) and it manifested as large B cell lymphoma on his left lung in the same area where he has a lot of scar tissue from his never-ending pneumonias. For someone with so much going against him, Brendan is a kid who rarely ever complains. He is a busy and will go until he collapses because he just can't stand to miss a single thing. He loves to laugh and run and play. He likes to think he is a ninja and a wrestling champion. He wants to be a police officer, a firefighter, a trash collector, and a scientist. He has a wicked sense of humor. He has a passion for all foods that are spicy and puts hot sauce on everything. He'd probably put hot sauce on ice cream if I'd let him but I can't stand the thought. He has crazy dance moves he learned from his brothers. He wants to pretend he isn't sick.

As his mom, my whole entire goal now that he is finally getting older (when they weren't really sure he would make it to the age of 2) is to make sure he has a quality life. It is not realistic to think he's going to live forever because even now, behind his shining spirit and active life, his medical team and I are trying to control his blood pressure, his ability to breathe, and balance all his medications. The damage that some of his medications can cause his organs has sort of been held at bay but it's starting to catch up with him. I can't promise quantity, so quality is the goal. I would love to get a portable oxygen condenser for when he starts needing oxygen more consistently, heck, I'd love to get any equipment that insurance won't cover that will make him as mobile as possible. Brendan was switched over to a palliative model of care about two years ago because he's tired of being poked and prodded and he just wants to be outside the walls of the hospital. Palliative care gives him a voice that he wasn't allowed to have because he was "too young" and I was still living in fear of losing him.Palliative care makes it so he can go and spread his infectuous joy and courageous spirit with everyone he meets. He inspires so many people because he is able to just be now and he is just so cool. It's hard to stay in a negative frame of mind when someone so young and so sick can still be bouncing around even though, clinically he's nearly to the point where he could have a major stroke. He doesn't look sick much of the time and that is a testment to his powerful spirit. Brendan loves meeting people and anyone who is willing to get down to his level is offically good people in his mind. He is wise beyond his years and empathetic and just wants everyone to have fun in life with him. We are grateful to be part of this campaign to raise funds and awareness for other's trials and journeys as well.

Sincerely,

Brendan's mom,

Genevieve Davies
https://www.facebook.com/search/str/Personal+Website/keywords_pages/?ref=page_about_category
  • Artist

    Brendan

    7 yrs old

  • Artist

    Paper Clouds

Excerpt from Brendan's Story: Brendan is a very unique young man; he is a sweet little boy in the body of a very old man. He was diagnosed with ostial atresia of the left main coronary artery and endocardialfibroelastosis (EFE) when he was 2 1/2 months old. He had his first open heart surgery at 3 months old. He has been through a total of two CABG bypasses, a stenosis repair and ultimately required a heart transplant just before he turned 2 years old. He has had five major heart attacks and has had many smaller events. He also has an unspecified form of dwarfism, chronic lung disease and chronic kidney disease. During the summer of 2017, he spent his whole summer break being tested and they found he acquired post transplant lymperoperative disorder (PTLD) and it manifested as large B cell lymphoma on his left lung in the same area where he has a lot of scar tissue from his never-ending pneumonias.

For someone with so much going against him, Brendan is a kid who rarely ever complains. He is a busy boy and will go until he collapses because he just can't stand to miss a single thing. He loves to laugh and run and play. He likes to think he is a ninja and a wrestling champion. He wants to be a police officer, a firefighter, a trash collector, and a scientist. He has a wicked sense of humor. He has a passion for all foods that are spicy and puts hot sauce on everything. He'd probably put hot sauce on ice cream if I'd let him but I can't stand the thought. He has crazy dance moves he learned from his brothers. He wants to pretend he isn't sick.

Sincerely,

Brendan's mom,

Genevieve Davies

Any time you purchase a Paper Clouds Logo design, 50% of the proceeds go directly to the charity of that campaign!!