There’s a basketball hoop standing in my backyard. In February, Alexander begged us for it, even though his walking began to decrease in December. He loved it and was so proud of himself every time he would make a basket, albeit the hoop was hung very low to accommodate him. He was flip flopping between dreams of being a basketball player or being a football player. Sadly, we knew that Duchenne would not allow that.. For the past 48 months we have been involved in a double-blind placebo based clinical trial. We were the lucky ones. Pfizer, like that basketball hoop, gave us hope.
With all the incredible science and technology out there solving every other riddle with other diseases, we believed, this would be promising. It would keep him walking until the gene therapy drug would be available in early 2018. Pfizer – the multi-billion dollar Pharmaceutical company gave us the hope of an experimental drug that Alexander took through an IV infusion in the hospital once a month for 2 years. We signed his life away, and agreed to partake in a completely unreasonably designed trial for a child. A great risk – but with possibly a great and unprecedented, reward. You know what? The drug didn’t work. He is FAR worse than when he started and the criteria of the trial was overwhelming and overbearing for a child. Who do you know could tolerate multiple MRIs, monthly fasting bloodwork with 8 vials, physical therapy assessments, monthly stool sampling, ECG’s, and echo cardiograms for 2 straight years, all for a placebo based trial for a drug that we have zero assurances will have any benefit. My son is a Saint. He Believed. It was harder on us than on him. He missed hundreds of school days, and playdates with friends. No child should have to undergo that kind of “lab rat” rigor, unless of course, we are certain there is a positive outcome. So this is where we are. He is weak. He cannot walk on his own, and can no longer get off his stair lift in his playroom and walk to the couch to play his favorite video game. At our last clinic appointment, the concerned look on our doctors faces was alarming when they saw him trying to walk. They swiftly advised us to order that “chair with wheels” – that I cannot even say out loud or write. An accessibility company is coming to our home next week, to fit him for this “chair with wheels.” Can we escape this planet and pretend this is not happening? Do I have to answer the door? How do I explain to my child that he should be relegated to a “chair” now? How do I explain to my baby that he can no longer do things he once did, nor do the things he’s dreamt of doing his whole life? Who the hell am I – to shatter his dreams? Damn you Duchenne. You suck.
We have tried to take the “Suck” and make lemonade out of our “lemons.” We started our foundation WALKING STRONG which was a bold and ironic name. Alexander was walking pretty strong in 2014, and we convinced ourselves that the meaning would emulate, keeping the Duchenne boys walking strong, but also “walking strong” with the Duchenne boys and families. Well –the unthinkable happened. the meaning has changed for us in a matter of months. Right after he ended 5th grade this May, Alexander stopped playing basketball in the backyard, and hasn’t looked at the hoop since. It stands in our backyard as a reminder of what was, and what (maybe) will never be. It is like a huge symbol of defeat standing as a reminder for us each and every day. I can’t give the damn thing away, because it will mean we have given up. The basketball hoop calls to him. Perhaps a miracle will help him answer.