SMA awareness
By Staff
August set for SMA Awareness Month
Melissa Cason
State Sen. Roger Bedford signed a senate resolution declaring August Spinal Muscular Atrophy Awareness in Alabama Friday afternoon.
The Alabama Chapter of Families of Spinal Muscular Atrophy, and the family members of a local SMA patient, 18-month-old Aiden Bundy, backed the resolution.
"It's heart breaking to see such an disease affect the young ones like little Aiden, but it's when babies are affected that encourages change, which will help find a cure," Bedford said during the signing.
In the resolution, the senate recognized that one in every 6,000 is born with SMA, and that 7.5 million Americans are carriers of the disease.
"There are 58 known cases of SMA in Alabama," Bedford said. "There is a possibility that there are many more undiagnosed cases in the state as well."
Valerie Tittle, Aiden's grandmother was there when Bedford signed the proclamation that is so close to her family's heart.
"We are working to raise awareness that this disease even exists because before Aiden, we didn't know either," Tittle said.
Aiden was diagnosed with Type 1 SMA at five months old, and his health has deteriorated ever since.
Aiden's mother, Dawn, stays in contact with other families of SMA patients for support to help her through this difficult time.
The Bundys know that each passing day could is only one day closer to not having Aiden. That's why, the family is working with organizations such as the FSMA and the Muscular Dystrophy Association to bring awareness to the disease and raise money for SMA research.
Tittle said that Aiden is doing well at this time, but we are dreading cold and flu season, which is only weeks away.
"Aiden can't get sick," Tittle said. "If he get the smallest of colds, it could be a life threatening situation for Aiden."
Tittle said the Bundys now have a stroller that accommodates all of Aiden's machines so that the family can now leave the house, and Aiden has been able to go a few places. Before the stroller, he stayed at home all the time.
"He will participate in a couple of fundraising events for MDA and FSMA as long as his health permits," Tittle said.
The Bundys hope that the awareness of SMA in Alabama and in the rest of the country will lead legislators to make funding available for SMA research.
