Words fail us all the time. I was reminded of the inadequacy of words at my friend’s house last week. He has a son with Duchenne Muscular Dystrophy (DMD), a genetic neuromuscular disorder affecting some 1 in 3500 boys. There is no cure for DMD.
The life expectancy of a child with DMD has grown from 15 years to maybe 25 years with comprehensive care. My friend’s child was diagnosed six years ago when he was three. In six years my friend and his wife have learned a lot about DMD and spearheaded the development of a state-of-the-art comprehensive care clinic at UCLA as well as numerous research projects to find a cure. They’ve learned enough to know that every year they can extend a life with better comprehensive care, the closer a child is to living in a time when a cure is available. And a cure is inevitable — it is merely a matter of money and time to get there.
My friend’s mission to find a cure and build a clinic were told in a recent Los Angeles Times article. I visited my friends in their home to introduce them to another friend who built a camp for kids with medical difficulties (The Painted Turtle) that hosts a DMD week each summer. In our meeting, we watched a video of the DMD campers having fun at camp, unhindered by their physical disabilities. It was during the video that tears slowly dripped down the face of my stoic scientist friend, Stan, who like me was raised in the Midwest where we learn to keep our emotions in check at a very early age. While that trait bodes well in academia (where Stan and I met and have spent our careers) it is far from useful when coping with the pain of a child’s potential loss of life due to a progressive disease.
No words can convey the sorrow that swept across Stan’s face as he watched the varying ages and stages of DMD — ages and stages that lie ahead for his child. It is this depth of love that a parent has for a child that words can never come close to reflecting. That love is so joyous, so rich and so blissful that it can only compare with the magnitude of pain felt in response to the possibility of this joy being taken away. The idea of losing a child to illness, accident or some other tragedy takes our breath away as parents, because the love we have is our life, we literally feel we cannot breathe without them.
I thought about how tragic it must feel to know, as a parent, that there is a cure, just years away for DMD, if enough money were available to move the research forward faster it could be today; it must be heartbreaking to know that the millions of children robbed of their adulthood by this disease will someday be a thing of the past — some day, sometime, in the future.
Every dollar can help make a difference so donate if you can. Words cannot heal the pain of parents and children affecting by DMD, but clinics and cures will make them unnecessary.
To help find a cure and support the clinic, go here: giving.ucla.edu/duchenne
To contact the clinic: www.cdmd.ucla.edu
For more information on DMD go to the parent project muscular dystrophy