A one-year-old boy is teaching the Tri-Cities about a Spinal Muscular Atrophy. S-M-A is a common a disease that destroys voluntary muscle movement. But few of us have ever heard of it. August is S-M-A awareness month and some Kingsport parents want to teach you more.
It was like a nightmare for Crystal and Josh Arnold when they heard their son, Devin, had a genetic disorder they know nothing about, and neither did anyone else. "We never expected this to happen to us, and we had never heard of it before and want more people to be aware that this can happen," said Crystal. "Doctors here are pretty much clueless to it," she says.
Ronnie Cutshall is one of Devin's nurses, "I've been in the medical field for 25 years, all across the United States and I'd never heard of it." So for the past several months they've all been learning together about SMA.
This is a disorder that has basically left Devin paralyzed and will progressively get worse. 50% of young children diagnosed will die before they are two, but there are adults living with this disease.
Devin's Dad says they are hopeful, ""He looks fine, he's a happy baby and that's because we care and try. He's got the best care he could have and that's all we can do." Mom and Dad are trying to make the best of this difficult situation and spread the word about the disease to the Tri-Cities.
Researchers say they are close to finding a cure. In the mean time, young Devin, who had his first birthday yesterday, keeps a smile on his face that keeps his parents going.
Due to the rarity of the disease it's not known exactly how many cases have been discovered in . There's a local support group in Knoxville, but there are no support groups available in Virginia. For more information you can visit the web site at www.fsma.org.