Four Local Children Suffer Spinal Muscular Atrophy
For Mary and Stephen Bodzo, of Belleview, and Stephanie and Tim Price, of Ocala, the news was encouraging. The parents of SMA afflicted children, the Bodzos and the Prices teamed up to organize the golf fund-raiser. Mary said she is hoping the research will help make a better quality of life for her daughter, Krista, who has Type II SMA.
"They believe there will be some reversal of symptoms of children living with it now," Mary said. "In the meantime, it doesn't stop the ongoing search that Stephanie and I do-and other parents do-to help them be as healthy as they can be."
To the Prices, it could mean one more miracle for their daughter, Hannah. She has lived longer than the 18 months doctors first predicted. Now 3 1/2, Hannah has made several advancements through diet therapy using amino acids.
"The fact that we haven't been to the hospital in almost two years is wonderful", said Tim. "It was a nightmare every time we had to go. Our hope is that she will walk, breathe, that she'll be able to do things that normal, growing kids can do."
According to a report from Families of SMA, the disease strikes one in every 6,000 babies. There are several forms of SMA which span the various age levels, with one form striking only males. Also, there are four levels of severity, with Type I being the most severe. FSMA, a support and research organization with 18 chapters and 3,500 members worldwide, is committed to raising $4 million this year for 22 different research projects, with $2.5 million going to the drug study.
A golf tournament is potentially one of the bigger fund-raisers, said Audrey Lewis, executive director of FSMA in Libertyville, IL. Also the parent of an SMA child, Lewis said huge strides have been made in research since the formation of FSMA in 1984.
"Sixteen years ago, we didn't even know what the gene was, much less where it was housed," Lewis said. "The biggest thing was, we found the chromosome, then found the gene, and then the protein. Our hope is to put SMA on the extinct disease list."
For information about the fundraiser golf tournament, call (352) 245-9119.