Diagnosis is Just the Beginning of Your Journey
Getting the diagnosis that your son has Duchenne Muscular Dystrophy is a difficult thing and there really isn’t any way to play that down, but it’s important to keep in mind that it can also be viewed as the start of a new journey. It is a pivot in the life that you had imagined for your child but by no means the end of it. I have had the privilege to be a part of Ryan’s journey which has been nothing short of amazing. As a child, Ryan still played sports and joined clubs which lead to friendships that still stand today.
There is a very strong likelihood that your beloved son will still be able to achieve many of the things you dreamt of before you knew he was afflicted with this terrible disease. It may not look like you would have first imagined and dreamed. But that doesn’t mean he won’t get to live a fulfilled life and make you proud.
Independence is a natural progression of growing up. It is strange and beyond cruel that the timeline of the progression of this disease is a nearly direct parallel with boys growing up. As most young boys get their first bicycle, boys with DMD start to lose their strength, and riding a bike becomes a challenge that soon turns impossible. As kids enter middle school and start going over to other friends’ houses and having sleepovers, often, boys with DMD begin to need a wheelchair, and going over to friends’ houses becomes a big challenge. This could lead to a huge setback and roadblock to allowing friendships to prosper.
Our parents always did everything they could to make our house as inviting as possible. When Ryan went to his friend’s houses, they did everything possible to encourage and help make the situation as accessible as possible. In high school, our parents worked diligently with the principal and staff to put in handicap-accessible entrance doors so that he would not need to always rely on the help of others. Luckily, we lived within a half-mile of the high school, which provided Ryan the freedom to drive his wheelchair to school on his own and not feel like a kid and outcast with his mom dropping him off in the minivan out front.
The best gift my parents were able to give Ryan growing up was the freedom and support to build friendships and the independence to pursue what he wanted. He has some amazing friends who have helped him to maintain his independence over the years, while also sharing in his love of music. Partner that with Ryan’s attitude and determination to make his life about far more than the disease and he has done more than most people I know.
Learn more about Ryan’s story, his music and Coming Together.