Greetings, We are the parents of a child with Duchenne Muscular Dystrophy. His name is Samuel, and he's 8 years old. We're guessing that after hearing/reading previous stories, you're familiar with the devastating implications of this disease. Just how devastating it is can only be fully understood by the families of a child who has it. But we're going to try to explain what it means to us. The word 'devastate', according to Merriam-Webster, means 'to destroy much or most of (something) : to cause great damage or harm to (something)', also, 'to cause (someone) to feel extreme emotional pain'. Yet these definitions don't capture what Duchenne really means. Duchenne means your active, fun loving son can't run with the neighborhood boys because he gets too tired. It means he can't go on bike rides with his family because his muscles don't work right. It means researching, planning for, saving for, searching for, and purchasing a home that can be made wheelchair friendly. It means selling a house you spent 10 years fixing up because it can't be made wheelchair friendly. It means countless doctor & therapy appointments, learning how to perform physical therapy stretches at home, and trying to explain to your son why it's in his best interest to complete his stretches every morning and night. It means taking steroids (which have many detrimental side effects) every day. It means traveling to a hospital in a distant state in order to receive the best care possible. It means taking time off of work, arranging child care for your younger son, and spending lots of money to travel to and from said hospital. In Sam's case (as in many others with Duchenne), it means a diagnosis of dyslexia and dyscalculia, which have implications of their own. It means having to advocate for your son at every activity - cub scouts, school, church - you name it. It means facing activity leaders that refuse to meet nothing but the bare minimum requirements for accommodation. It means ignoring foolish comments about the longevity of your son. It means trying to explain to family and friends that your son can't go to the jumping castle birthday party because jumping is very detrimental to his muscles. It means helping him into his night splints every night before bedtime. It means watching your son's physical strength slowly decline, and knowing you're completely powerless to stop it.
Sam is in the early phase of Duchenne. And though we don't have a crystal ball, this disease follows a very predictable course. We know what that course is, and it's not very hopeful. Duchenne is a challenging, incredibly complex disease. It's changed our perspective in so many ways. We're fortunate enough to embrace a very strong faith in God, and know that through Him, Sam will impact our world in ways we can't yet imagine. But we can't ignore how it has, and will continue to, affect him. Sam's life has been significantly altered because of Duchenne, and so has our family's, and our friend's, lives.
We will always, always support Duchenne research, and will always, always pray for a treatment that will allow our precious Samuel more time here on earth.
Sincerely, Shawn & Andrea Duerkop Tucson, Arizona