Family in Kingsford brings awareness to Spinal Muscular Atrophy

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KINGSFORD, Mich. (WLUC) - August is Spinal Muscular Atrophy awareness month.

Curtis' family taking a walk.

Curtis is living with type one Spinal Muscular Atrophy, but he's just like any other 5-year-old.

"He doesn't see what other people see. You know there's nothing wrong with him. He is very happy and we just find different ways to do things,” said Curtis' Mother, Candee Brownson.

SMA is a genetic disease that affects parts of the nervous system which controls voluntary muscle movement.

"It's the number one genetic killer, but nobody's heard of it. It does not affect him cognitively, his little body just isn't as strong,” said Brownson.

Curtis was diagnosed when he was just a baby. His mother is his primary caretaker. Their daily routine consists of respiratory therapy, feeding and keeping him comfortable.

In December of 2016, the F.D.A approved a treatment for SMA which is supposed to stop progression of the disease. His sister, Chailee Parr, said they've seen improvements in his breathing and leg movement and that's all she can hope for.

"So for him to be able to come off of BiPAP more often, you know just gives him a better quality of life, less stress and anxiety over not being able to breathe and that for me is a huge thing for me for him."

Curtis now goes every 4 months to receive the treatment.

Aside from doctor’s appointments, Curtis enjoys spending time outside and going on walks with his family.

He will even be starting kindergarten in the fall in Kingsford.

His mom said they just want to spread the word.

"We love kids to come up and you know say hi. Ask questions, ask what he has, we’ll tell you. We want to get the word out. We want to bring awareness to SMA.”

Just recently, Michigan added SMA testing for newborns which is a huge step forward, but for now Curtis is enjoying life.



 
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