Ryan suffers from a rare genetic condition called Junctional Epidermolysis Bullosa, or JEB. This condition causes blisters and painful wounds to develop with even the slightest touch, friction, and pressure. He lacks the skin protein that acts as “glue” in non-EB skin. This affects his entire system, including his airway. Because of this, he is completely dependent upon us for every detail of his care, is confined to a wheelchair, and has a tracheostomy.
In Ryan’s words:
“EB Sucks. It’s a hard disease to have and I sometimes feel left out and alone. No one really understands how painful it is. Because of EB, I am in a wheelchair and I have a trach to help me breathe. The trach can be very scary, and worries me a lot. “
I hope to be able to travel more with my family in the future. I love to see and experience new things. Having EB has made it difficult to travel because of all of my equipment and supplies. If I was cured of EB, I would travel the world.
I try very hard to live a normal life like everyone else. I love my friends and play-dates, and my family…and video games, too! I dig music and am involved in band; last year I played the quarter-sized cello, and this year I am a percussionist. I am a member of the town’s youth football team with all of my friends, and call plays from the sideline as well as support the team. I hope to run the length of the field in my wheelchair with a game winning touchdown!!!! I also play baseball and love attending hockey games.
Thank you for reading my story. Love, Ryan”
As Ryan has gotten older, his disease has progressed. He is growing! but with growth comes increased pressure upon transferring him, and more wounds. Ryan’s body is wrapped in dressings that help heal and protect him. This wound care and bathing regimen takes 1 hour in the morning, and 2 hours at night, along with wound care necessitated during the day and hourly overnight care. Because of the need for tracheostomy placement, Ryan had lost the ability to project his voice. This lack of ability to be heard has been extremely frustrating for him-particularly since he is so witty. His humor is often lost in translation.
Ryan loves sports and participates as he can. He is on the Challenger baseball league, has tried soccer and basketball, and is he newly-named honorary Captain for the 4th/5th grade football team. He is very musically inclined, and has taken drum lessons since the age of 4. His smile and humor will steal your heart!
As a team, we are fundraising to help Ryan be a bit more comfortable with this devastating disease. A wheelchair van will not only increase his independence, but will reduce the need for transfers that most often cause huge blisters and wounds. It will also increase our independence as a family because travel is limited-with a wheelchair that weighs 80 pounds is prohibitive when it comes to multiple daily errands. We are also trying to fund a wheelchair lift for out home, as steep stairs are treacherous when trying to lift and transport him by hand.
Let’s help Ryan travel the world. Your support and donations are greatly appreciated!!!
Ryan has chosen to fundraise with Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for donors. Donors can be sure that funds donated will be used only to pay or reimburse medically-related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Donate Now button.
For more information, please contact Help Hope Live at 800.642.8399.
Thank you for your support!
