Parent Project Muscular DystrophyNov 16, 2012
Our son Peter died of Duchenne muscular dystrophy 32 years ago, so why are my husband and I planning to attend the Parent Project Muscular Dystrophy Gala in New York on December 6th? Because I wished PPMD had been there for me when I needed them. Because I’m glad they’re there now. Because, for Pete’s sake, I want to support them.
Peter was diagnosed with Duchenne Muscular Dystrophy in 1968. I am grateful that I had my husband for company, because in 1968 we were otherwise cut off from other parents whose children had DMD. There was no community to turn to. There was no internet; no websites; no email; no blogs; no “friending,” and no outreach to parents or children dealing with DMD.
The physically able children at Pete’s school were friendly, but as our son grew weaker, fewer and fewer of these active children chose to be his playmates. I couldn’t blame them. Ultimately, he was socially isolated, dependent upon us, his older brother, and our adult friends, for company.
I searched the region in vain to find other children Pete’s age who had DMD, children with whom he could play and perhaps, as he grew older, even share his deepest thoughts and fears. The bonus for us would be their parents, people with whom we could share our deepest thoughts and fears and more – people with whom we could advocate for better and more hopeful lives for our children.
Now, years later, there are many wonderful and effective groups that advocate for children with DMD and their families. Parent Project Muscular Dystropy (PPMD) is the one my husband and I support. We like that they are not so singularly focused on finding a cure that they neglect the needs of children who are currently afflicted. We like that they bring parents and children together to form lasting and mutually beneficial relationships. We are happy to march with them through the halls of Congress, advocating for more research funds. And, of course, we are gratified to know that PPMD is internationally recognized for their research successes.
There’s lots of trivial, virtual “friending” that goes on these day, but there’s nothing flimsy about the bond shared by the mothers and fathers of children with DMD. They all want their sons to survive. That’s a lot to have in common.