Spinal Muscular Atrophy

‘I asked my parents, ‘Why am I not like all the other kids?’ to which they replied, ‘That’s just how God made you.’: Young woman with Spinal Muscular Atrophy pursues career, ‘I found a way to make life happen!’

“I’d sit on the sidelines during PE while my peers played and had the time of their lives. I felt envy toward able-bodied children. I was that awkward girl in a wheelchair who didn’t know anybody. I didn’t fit in. One morning, I awoke to muscle loss in my hands. ‘But how will I create my art?!’ I had to find a way to make life happen.”

‘She might not see her first birthday.’ Her right arm looked like a little chicken wing. I knew it was urgent.’: Couple loses daughter to Spinal Muscular Atrophy, ‘Love can heal any wound’

“She couldn’t hold her head up and struggled to breathe. Every single doctor said, ‘There’s nothing else that can be done.’ I felt so helpless. But there was nowhere else I would’ve rather been. As we heard her breathing rattle with fluid, I cried out to God to end her suffering.”

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