By Ann Schrooten PART II – The Personal Perspective The Role and Challenges of the Caregiver Caring for a child who is ventilator dependent requires 24/7 vigilance and involves a level of skill and knowledge that exceeds the typical parent’s experience.
By Ann Schrooten PART I – The Technical Perspective My son, Jack, is thirteen years old and he has an unknown subtype of dystroglycanopathy congenital muscular dystrophy. Jack suffers from severe muscle weakness and respiratory insufficiency and has been ventilator dependent since he was four months old.
By Kelly Berg I am a 37-year-old female and I have Congenital Muscular Dystrophy. With CMD, the degree of respiratory involvement varies. My respiratory weakness began in early childhood and has slowly progressed as I’ve gotten older.
By Caitlin Bartley. I’m 21 years old and I have Merosin-Deficient Congenital Muscular Dystrophy. Like a lot of people with this disease, I have some facial deformities. I have an elongated face and what is called an “open bite” – I only have a couple of teeth on each side that touch when I bite [...]
By, Krista Brown Breathing was one of those automatic functions that my family easily took for granted years ago. Not anymore! Our son Joshua has Ullrich congenital muscular dystrophy, and restrictive respiratory disease. He is now a fifteen-year old high school sophomore that has a challenging schedule and social life, which he tries to [...]
By Sarah Adam, now 11 years old, was diagnosed with Centronuclear Myopathy (CNM – genetic form unknown) at around 1 year of age. This is a story of our family’s journey to find the best respiratory health for him.
By Anonymous We have twin two-and-a-half year-old daughters who were diagnosed with Merosin Deficient Muscular Dystrophy (MDC1A) when they were eight months old. Neither of us has any family history of neuromuscular problems so this was a big shock to us; new parents, in a new city, in a down economy, etc. We’ve accumulated a [...]
By Joe Pinkelman Our daughter Maia is mute, but can hear perfectly well. She is also mentally delayed, so to add to the fact that she can’t talk, her response time is slow. Her first one-on-one aide decided that she was going to teach her sign language.
By Ann Schrooten “The physical acts we perform for our children easily become tiresome chores. There are days when we think we cannot do another feeding or give one more bath. And then there are those moments when we give ourselves completely in response to our child’s need.
By Wayne Ogata Recently, I returned home to find my son Alex (7) and daughter Tracy (16) arguing with each other. As customary, I turned to Tracy and told her she needs to understand Alex better and be aware of his limitations.