Muscular Dystrophy

‘Well, it looks like you have a Duchenne boy.’ My stomach dropped. The more I read, the more I started to become numb.’: Mom shares journey of son with Duchenne’s Muscular Dystrophy, ‘You are in charge of your outlook on life’

“I was so angry. I was angry at the doctor who said, ‘You have a Duchenne boy but here’s a great camp we offer. It’s free!’ I was angry at the physical therapists who had worked with my son for years and hadn’t caught on. I was angry I had to wait over a month to be told my seemingly healthy son is terminal.”

‘I was giving my son a bath when I noticed 3 little pubic hairs. I got an ominous call from our pediatrician at 6:30 in the evening.’: Mom works to cure son’s Duchenne Muscular Dystrophy, ‘Where there is life, there is hope’

“The doctor abruptly gave Max a quick examination. WHAT?? Our world flipped off its axle. I cried incessantly. The overwhelming feeling of grief felt too much to handle. I said to my husband, ‘If anyone can cure this kid, it’s us! We were chosen to be his parents for a reason.'”

‘Caleigh complained of back pain. ‘Her spine is collapsing,’ the doctor said. My sweet daughter was curving.’: Mom to daughter with muscular dystropy says ‘not every bad situation has to have a bad ending’

“Out of the blue, her ‘best friend’ no longer wanted to be her best friend. Countless strangers walk up and ask why she is using a ‘grandma scooter’ to get around. Any time she falls, people stare or laugh instead of rush to assist her. Still, she does not believe in ‘I cannot.’ Through all the needle sticks and surgeries, she does her best to comfort ME.”

‘I went on countless job interviews, but I didn’t ‘look the part.’ The second they saw me, the whole vibe changed.’: Woman with Nemaline Rod Myopathy embraces disability, ‘I want to be seen for the smart, fun, boss babe that I am’

“After graduation, I was excited to take on the world! That feeling quickly died. Every employer assumed I wasn’t qualified. I didn’t have a specific ‘look,’ or I didn’t fit the part. I realized I didn’t want to work someplace where I would be judged by the way I look, not by the work I contribute. Appearances matter, but they matter even more when you’re disabled. And the hardest part about being disabled isn’t being disabled. It’s fighting to be seen as an equal.”

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