“The doctor was right about one thing though, we would never be able to pay for this new treatment….alone.”
‘Is there a cure?’ The doctor cruelly replied, ‘Yes, but you’ll never be able to pay for it, so you better plan on having another child.’: Online community raise $900k for boy with spinal muscular atrophy
‘I took a big, deep breath. ‘So she was born yesterday?’ We were meant to meet her.’: Couple adopts baby born on late daughter’s birthday, ‘She gave me courage’
“Blake died one week shy of 11 months old in her daddy’s arms. ‘She is one day old.’ I told him she was born the day before, on Blakey’s birthday. ‘Wait, what? Are you serious? Well, let’s go get her!’ She seemed so tiny.”
‘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.”
‘The doctor said, ‘She won’t turn 18. I recommend having another baby.’ My muscles betrayed me.’: Woman details journey with Spinal Muscular Atrophy, ‘Find your inner strength’
“My braces grew taller, and eventually reached my thighs. I still recall each time I got a new pair and had to ‘break them in.’ I’d pace our living room till the sweat dripped and tears rolled. With each shaky step, I’d chant, ‘I want, I can.’”
‘He sounded congested all the time. ‘He’s just building his immune system.’ This cold landed him in the PICU, intubated.’: Mom advocating for Spinal Muscular Atrophy says, ‘Every single thing is a battle’
“He was always sick. When the doctor was listening to his lungs, he noticed his tongue was twitching. They stuck a probe into his muscles. ’Don’t google the disease.’ Of course, I immediately googled it. I shouldn’t have.”
‘I finally turned to my mother, unsure of wanting to know the truth, and hesitantly asked, ‘Mom, am I going to die?’
“Before me, on a poorly lit screen, was a prognosis I never expected to read. Every website shattered my heart as I scanned the same words over and over, desperately hoping to read a different outcome.”
‘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.”
‘I didn’t want my heart broken again’: Wheelchair user finds her ‘true, unconditional love’ after trying to ‘self-sabotage’ the relationship
“He never once made me feel insecure about my disability and never once asked me what my disability meant for my future.”
