My cause definitely found me. It crept into my life from the tiny body of my son who could not lift his head, roll over, get on his hands and knees, sit up or crawl. It taunted me from a multitude of physicians' offices during its elusive days when those doctors could not yet identify it. It made my heart race when I first heard its name and learned of its destructive nature. It knocked the wind out of me when I heard these words uttered by my child's neurologist...“Our worst fears have come true.”
My cause began as my worst nightmare. It was the unwelcome, unimaginable, unacceptable tragedy that would change our lives forever. Its name is Duchenne Muscular Dystrophy. For months I could only say those words with contempt because this muscle disorder was slowly, painstakingly going to strip my child of his freedom and eventually take him from me altogether.
In my times of solitude, I would sob as I pondered the following
How was I ever going to explain this to him?
How would I ever get the words out?
How was this going to affect his siblings?
How was I going to survive this?
Three and a half years later, I have survived and I am surviving. Not a day goes by that I don't worry about Matthew's future. I have the unwanted view of what the future likely holds for my child and my family. But I don't feel so hopeless, so desperate and so terrified as I did during the winter of 2007. At six years old, Matthew is very mobile, very active and blissfully happy. I have learned to better focus on the joys of today and worry less about the uncertainty of tomorrow. Each day is different, but each day is a gift.
This has been an unimaginable journey with its highs and lows at the greatest extremes. I don't have to describe the lowest points. Anyone who has ever loved a child can imagine the darkness that envelops me at times. The highs no longer surprise me, but they certainly were unexpected when they began three years ago. They now are a regular part of our experience and they are 100% attributable to the human connection.
This human connection takes many forms. From the acquaintance who tells me that she and her daughter pray for us every night, to the dear friends who advocate for our child year after year and educate their friends about DMD, to the community who embraced us in every way possible, to the organization whose mission is to cure this disease and who has made us feel a part of their family – these are the people who make me grateful for life, even its tragic moments.
Never doubt the power of compassion. It fosters strength and breathes new life in those who receive it. It is the people in my life who have grieved with me, have inspired me to fight and have celebrated success with me who have turned this journey into one worth taking. This is Inspired Wining. I hope it will lead you to your incredible journey. Thank you, Matthew, for molding me in unexpected and wonderful ways. Every day is a gift and so are you.
The day we found out about Matthew having DMD I was in a state of disbelief. Up to that day in my life nothing had ever happened that even came close to the level of grief and sadness that I felt at that moment. There was no way to predict it, no way to understand why it had happened to Matthew, and I knew my life was going to get more difficult than I had ever imagined.
My primary concern for Matthew was no different than before - how to give him the best life possible to enjoy and cherish. The hard part looking ahead is how to make that happen as his muscles become less functional over time, and how to get him to enjoy his life even though he can't do a lot of things other people can do. There is a tremendous amount of research going on at the moment and I have to hope that science will play its part in giving boys with DMD better lives in the future. I just hope that future is right around the corner and not 10 years from now.
Regardless of what happens with science, my role as a father remains unchanged. I want Matthew to experience as much normal life as he can, and to enjoy his life for what he can do. So far, he is an extremely happy boy and does not seem to realize the magnitude of what is going on with his body. I dread the day I have to tell him what is really going on, or when I have to tell Owen what the future might hold for his younger brother. I don't like to get too wrapped up in what might happen down the road because any number of medical breakthroughs may occur that would significantly change the outlook for Matthew's life. I am an eternal optimist, which gets me in trouble with situations like these, but as a more scientific-minded person I believe that a solution will be found and I would rather focus my daily life on cherishing every moment I have with my family, as opposed to dreading the future every day of my life.
I do what I can with fundraising and learning as much as possible about the treatments that might be around the corner. I want to make sure as soon as something comes mainstream that can help Matthew, we are standing in line waiting for it. Deep down inside I will always have the anxiety and fear of wondering what will happen, but right now Matthew is happy and enjoys playing with Owen and Mackenzie. Hopefully Matthew will continue to lead a happy life no matter what happens...and I will be right here to help him through it.
Duchenne Muscular Dystrophy is the most common fatal genetic disorder diagnosed in childhood, affecting approximately 1 in every 3,500 live male births (about 20,000 new cases each year). Because the Duchenne gene is found on the X-chromosome, it primarily affects boys; however, it occurs across all races and cultures. Duchenne results in progressive loss of strength and is caused by a mutation in the gene that encodes for dystrophin. Because dystrophin is absent, the muscle cells are easily damaged. The progressive muscle weakness leads to serious medical problems, particularly issues relating to the heart and lungs. Young men with Duchenne typically live into their late twenties. Becker Muscular Dystrophy, which is less severe than Duchenne, occurs when dystrophin is manufactured, but not in the normal form or amount. Because of this disparity in the severity of the different forms of these disorders, we will refer primarily to Duchenne throughout this site. Duchenne can be passed from parent to child, but approximately 35% of cases occur because of a random spontaneous mutation. In other words, it can affect anyone. Although there are medical treatments that may help slow its progression, there is currently no cure for Duchenne.
Parent Project Muscular Dystrophy is the largest nonprofit organization in the United States focused entirely on Duchenne. We take a comprehensive approach in the fight against Duchenne—funding research, raising awareness, promoting advocacy, connecting the community, and broadening treatment options. Only this comprehensive approach will lead to the ultimate success—the day that 100% of those diagnosed can turn to a treatment that will end Duchenne.
If a boy has a combination of the traits listed below, he should be tested for Duchenne:
