CREATE YOUR SHIRT & CHANGE A LIFE

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
  • Days
    9
  • Hours
    18
  • Minutes
    11
  • Seconds
    30
  • 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!!