by Mary-Lou Weisman
My husband Larry and I are veterans of Duchenne. Our son, Peter Benjamin Weisman, died of Duchenne in 1980 at the age of 15-1/2. Those were the bad old days, when there was no reason to hope. Gene therapy was in its infancy. Prednisone had not yet been tried. The only option we were given was a heel cord operation which would cut Peter's achilles tendon, thereby allowing him to "walk" stiffly in braces for perhaps a year or two. We turned down that option and we never regretted that decision, although Peter was in a wheelchair by the time he was 7 years old.
We couldn't afford hope. All we could do was devote ourselves to making Peter's life as happy as we knew it would be short. The old saying, "Live each day as if it were your last" is quite a challenge, especially if you must take it literally. So is the equally old adage, "Take it one day at a time." But the reason truisms are truisms is because they are true. If you can manage to face Duchenne one day at a time, instead of projecting months and years into the future, you will be better off. Cry when you need to cry. That will make it possible to enjoy when you can enjoy. Our marriage took a beating, depression stalked our days, our older, well son Adam had to grow up faster than he should have, but we have survived -- dare I say thrived? Happy memories of Peter shine perpetually within us and bless our lives.
The difference between us, and boys and their families affected by Duchenne today, is that today people can afford to have hope. We stay in touch with the Duchenne community through our association with
Parent Project Muscular Dystrophy (PPMD)
the organization we believe is doing the most daring and promising research, as well as offering the best services to children. Genetic research has yielded precious clues about how to cure Duchenne. Trial studies are being conducted that weren't even imagined when Peter was alive.
There is a very strong, if not perfect connection between the amount of money raised for research and the speed at which a cure will be found. We should do all we can to "buy" research. My husband and I have set up The Fund for Pete's Sake which spins off enough money each year to buy the services of one researcher. We accomplished this by asking everyone we knew to pitch in and promising we'd only ask once. It wasn't easy to ask, but the response was gratifying.
I think we should all put our money where our hopes are. Raise money. Raise hopes.
Mary-Lou Weisman is a prize winning journalist and best-selling author of
“Al Jaffee’s Mad Life,” “Traveling While Married,” “My Baby Boomer ... She has also written for
The Atlantic Monthly, the
The New York Times. Her first book,
“Intensive Care: A Family Love Story,” is a memoir about her family's struggle to thrive even as her son Peter was dying of Duchenne. Critics have variously described Intensive Care as “rowdy,” “angry,” “moving” and “sometimes hilarious.” The book was made into a 1985 movie called
“A Time to Live!” starring Liza Minnelli as Mary-Lou.
NOTE: I have read
"Intensive Care: A Family Love Story" twice now, and its pages are stained with tears. It’s a powerfully honest book packed with life lessons (excerpts of which I plan to share in a near-future blog about the book.)
When I first learned of Cory’s diagnosis I called Mary-Lou out of the blue. I was a wreck. She had no clue who I was. Yet when I explained, she gave me all the time I needed and was amazingly kind, empathetic and comforting.
Thank you, Mary-Lou. And thank you for all that you have done, and continue to do, so that parents like me and Cory’s mom, Christine, can have a level of hope that didn’t exist for you and your family when Peter was alive.
Coincidentally, the Weisman family lives in my hometown of Westport, Connecticut
(see Dan Woog's 06880 Blog). Peter was five years younger than me, but I never knew or met him. I wish I had.
Dave Stalling (Cory's Father)
Blog originally posted at: www.TheCoryStory.com