In September 2006, we got the news that our son, Eddie, had Duchenne Muscular Dystrophy. He was just a four year old seemingly healthy and happy little boy. My husband and I immediately started to research this disease, the progression and any possible treatments. It was hard for us to read what the future was going to be like for our son. Once we digested the reality that there was no cure and no treatment all we had was hope. We said to each other there is progress being made in this disease and Eddie is only 4 and we have time on our side.
Well, that was nearly 8 years ago. We are still hopeful but time is no longer on our side. Instead we are in a race against time. Eddie is now 11 years old and in 5th grade. He is an excellent student and a talented artist. He still does not completely know what the future holds for him because neither my husband or I have the heart to fully disclose the ugly course of this devastating disease. Eddie takes steroids every day and has the typical, loveable moonshaped face of a boy with Duchenne. Eddie is still able to walk but has a motorized scooter for long distances. In the past year we have realize how devastating a simple fall can be to our fragile son. A simple twisted ankle resulted in a fractured tibia, a fall on the beach, a fractured left humerus and a fall off the couch, a fracture to the right humerus. Much to our surprise he has bounced back from these injuries and continues to walk, although we live in fear of the next fall. He still has a healthy heart and healthy lungs but again, we know that those major organs are on the Duchenne agenda in my son's body.
We are dealing with what we have labeled the "Sunday Night Blues". My son, alone with his thoughts, in his bed on occasional Sunday nights gets upset and sad about his physical condition. He wants to run, play sports, roll down a hill, jump over waves and walk on the beach. But he knows all those things are either too hard or too dangerous for him to do. Duchenne muscular dystrophy has robbed him of the simple life a child deserves. Eddie is the second of our three sons and the only one with Duchenne, but not the only one affected. Our oldest son, Ryan, is 22 years old. He is a 6'9" college basketball player. He will graduate college in May and it is his hope that while he attends graduate school he will be hired to be Eddie's classroom aide as he transitions into middle school. Our youngest son, Bobby, is a 9 year old 4th grader who plays baseball and basketball. He did a school project recently and when asked to name his best friend, he named Eddie. He is Eddie's upstairs "runner", he picks things up off the floor endlessly and without complaint. When Eddie gets hurt or is sad, there are two boys to console in my house. We recently realized when Bobby was invited to a roller skating party that we never taught him how to roller skate.....because Eddie couldn't'.
My children are happy but their lives are different because they have a sibling with Duchenne. Through it all we remain cautiously optimistic. We are currently in the process of enrolling Eddie in his first clinical trial for the drug, Tadalafil. We are hopeful this might be a drug that will prolong his ability to walk. We are praying that we do not get the placebo. There is no time for placebo. We are willing to take risks as parents as long as the drug is safe. If it is found to be ineffective at the end of the trial, then so be it. But if it is found to prolong the ability to walk then our son was robbed of 48 precious weeks that he could have been benefiting from this drug.
Time; that is really the theme that has carried us through the course of our journey. As Benjamin Franklin was once quoted, "Lost time is never found again." We cannot afford to lose another minute in this fight. There will be an end to Duchenne, we just pray that the timing will allow our son to be in the first group of survivors.