‘That first sickness was the closest it came to Bear not being around; it was one of the scariest, worst times.’

Bay Shore

“Bear is turning 6 and he was born with spinal muscular atrophy. When we found out Erin was pregnant, we were having twin boys, but one of the pregnancies didn’t continue and we found out a few weeks later, Bear has SMA. We were told he wouldn’t be able to move when he was born, so we expected the worst. He started to show symptoms around six months, and we ended up in a clinical trial for a medication called Spinraza.

“When he was one-and-a-half, Bear was in the hospital for two or three months with rhinovirus and he had trouble swallowing. That first sickness was the closest it came to Bear not being around; it was one of the scariest, worst times. Your lungs are the deadly part of SMA; if you can’t cough, you’re in trouble. Then he started hitting milestones, like being able to hold his head up. He’s still very vulnerable but hasn’t been hospitalized for sickness in two-and-a-half years. He’s had tonsil surgery because his tonsils were so inflamed, and he had hip surgery to stabilize him for down the road if and when he’s walking. And I explain this to him, he knows all of it, he’s like a little doctor. He knows that neurons die, and his brain can’t speak to his muscles as loudly as it should.

As for Bear, he says to other kids: ‘They should be brave, like me, because I did a lot of hard stuff. You should be brave too because then you’ll have a really good life.’

“Last year, Bear switched from Spinraza, which cost $125,000 per dose, so around $650,000 a year, to Evrysdi, because it’s oral medication, no more lumbar punctures. The pharmaceutical companies pay for the clinical trials, so we haven’t had to go through insurance. But there’s a lot of out-of-pocket costs, like staying in the city when he’s in the hospital, his equipment. We were very lost when he was first diagnosed — for the first year-and-a-half we were convinced it was a death sentence. And now we’re intent on helping people not make that same mistake.

“Erin and I are the chapter presidents of the Greater New York Chapter of Cure SMA, so families who just learned the diagnosis contact us. It’s hard as a parent when you first get that diagnosis to figure it all out and find your next resource. As for Bear, he says to other kids: ‘They should be brave, like me, because I did a lot of hard stuff. You should be brave too because then you’ll have a really good life.’”