Turning Passion into Promise to End Duchenne

PPMD is leading the Duchenne Muscular Dystrophy community through its commitment to research, education, advocacy and compassion.

March 19, 2010

Life is a Game

Watch Taja’s fantastic rap. Wheelchair football is liberating for football-loving boys and young men with Duchene Muscular Dystrophy and other disabling conditions. And it brings a whole new level of meaning to the beautiful game. Accompanied by musicians from the CBSO and a choir from Joseph Leckie Community College in Walsall that features Taja’s amazing rap, Bradley tells it how it is. A Rosetta Life Acorns Hospice collaboration.

On a First Wheelchair

A Blue One By Ivy Scherbarth October 7, 2011

My son, Rain, is four years old and is outgrowing his old baby stroller. Even though he is walking well for short distances, he will need some other conveyance for longer distances. After some consideration, we decided to approach the conveyance question the same way we might approach a pair of new shoes. After all, he needs a contraption to help him get from place to place. He’ll be using it a lot, probably every day. We figured he should be part of the decision of what to get. We laid out a couple of alternatives that we thought about equal in value, and asked for Rain’s opinion.

“Rain, you’re getting bigger and you’re about to outgrow your stroller. When you do, would you like to have a stroller that’s the next size up or would you like to have a wheelchair?”

Big, enormous smile. “I want a wheelchair! A blue one.”

“You know that it won’t be a power wheelchair like our friend Mark has. It’ll be a push wheelchair where you just sit there and a grownup will drive you. We won’t use it in the house. We’ll use it just the same way that [...] continue the story

A Moment in My Life

By Star Bobatoon

We are sitting in the parking lot of a small deli off Interstate 95. My 8-year old son has been crying in the back seat of the car for the last 20 miles. I assume his upset involves some interaction with his 3-year old sister but he shook his head when I asked if he wanted to talk about it. I warned that if he didn’t calm himself I would pull the car over and he would have to talk to me. Ten minutes later I pulled off the highway into this parking lot.

I am driving home to Virginia. My children have been in New York with my mother for the last few days while my husband and I attended a conference on Muscular Dystrophy. I have spent the last four days having this disease and the devastating effects it will likely have on my son shoved down my throat in 45-minute increments throughout the course of each day. I went willingly because it is information I needed to know but it was very hard to swallow.

Sitting in silence, I rub his back affectionately and he begins to cry again. When he calms I ask, “what was all [...] continue the story

Mastering Balance Beams: Parenting Children with Muscular Dystrophy

By Joan Fleitas

Have you ever walked on a balance beam? Much like a tight rope, the journey is perilous, with one step cautiously leading the other in an effort to remain stable atop the beam. Despite the winds — despite the narrowness of the beam — despite the distractions from below — the skill can be mastered. With persistence, much support, and an understanding that occasional falls might occur, ‘beam-walkers’ can indeed be successful. Parenting children with muscular dystrophy is much like mastering balance beams.

As parents, we all believe that we should be able to protect our children from harm, socialize them to be exemplary citizens, ensure their perfect health, and craft for them lives where they will surely live ‘happily ever after’. It is as if we perch ourselves on parental thrones when we give them birth. We learn eventually that we are not endowed with such power. When children are diagnosed with muscular dystrophy of any kind, we are given a crash course in humility.

Raising children in the best of circumstances requires that we do a lot of catching up. Just when we think we’ve ‘got it’, when we know how to respond to an infant’s cry, a [...] continue the story