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

White Cane and Wheels

Paul Apelgren wanted to make a film about his Aunt Carmen and Uncle Steve. Carmen wanted the film to be called Soul Mates. Steve wanted the film to be called Gimp Love. The film shows they’re not your normal relatives, they’re outspoken, genuine, and hilarious. They also face tremendous hurdles on a daily basis. The simplest of tasks are extremely difficult. Carmen has Retinitis Pigmentosa. She is ninety-five percent blind and what little sight she has left is going fast. Steve has Muscular Dystrophy. Two years ago he could still sit up; now he can barely wind his watch. His illness is terminal. Carmen says, “Hopefully people won’t feel sorry for us and all that crap because it’s so annoying.” They see their life as a movie, a love story. Carmen and Steve met in a disabled acting class after a run of failed marriages and relationships. The film is an intimate look at the power of love and how it sustains two people who by all measures seem like they cannot make it. As the story progresses it becomes clear that things are “not all peaches and roses.” Especially when the biggest obstacle is the floor. Tensions run high. Carmen is the [...] continue the story

39 Pounds of Love

39 Pounds of Love is the inspirational and humorous story of Ami Ankilewitz, a 3-D animator in Israel whose bodily motion is limited to a single finger on his left hand. At birth, Ami was diagnosed with a rare form of muscular dystrophy, later diagnosed as Spinal Muscular Atrophy (SMA), and was predicted to survive only to the age of 6. Now, thirty years later, he leaves the woman he loves and returns to the United States to confront the childhood doctor who predicted his early demise. Along the way, he comes to terms with a major incident from his past and pursues a lifelong dream: to ride a Harley Davidson.

Kickoff – Attacking the Lethargy

Jens L. listens to music that is much too loud, drinks too much and too quickly. He can’t find a job and thinks his parents were stupid. His slogan in life is “no risk no fun” and he dreams of having a girlfriend. At first glance a completely normal young man. Cut. Jens L. is in a wheelchair. Everything is abruptly different. A border has lifted, and fear rises up. The fatal diagnosis is “muscular dystrophy”, and suddenly it doesn’t let Jens L. belong to the life we believe we know so well. Especially when a documentary begins so “completely normal”, the subsequent shift appears even harder. The word “future” receives as completely different meaning.