KENT: Signing petition could bring hope to Warner Robins family
From time to time, I have helped to tell the story of Wyatt Holter, a resident of Warner Robins and the son of Katie and Josh Holter. Wyatt was born with spinal muscular atrophy, the No. 1 genetic killer of children younger than 2. Muscles wither and weaken -- especially in the spine, arms and legs.
Before she married, Katie was Katie Dunston. Her mother and father, Vic and Peggy Dunston, have both taught in the Houston County school system, Vic teaches music at Perdue Primary, and Peggy retired from Quail Run Elementary.
Katie and Josh started Wyatt's Wish, a foundation that helps children with SMA, by raising awareness and funds for research.
According to CureSMA, the life expectancy for a child with SMA is about two years. Wyatt turned 3 in August. There is no cure. One out of every 40 people are carriers of the gene responsible for SMA ,and one in 6,000 babies born will be diagnosed with SMA.
But there is hope -- an incredible hope -- and Wyatt and all the kids out there like him need your help. SMA families across the country are banding together, calling it The Fast Movement, and are asking their communities for assistance in getting a new drug fast-tracked for approval.
A drug called SMNrx has shown overwhelmingly positive safety and effectiveness in SMA patients per FDA standards. Trials have been given -- literally hundreds of doses to SMA patients.
"The life-saving and functional improvements experienced and measured in patients are beyond the hopes and expectations of researchers, physicians, patients, caregivers and pharmaceutical companies," Katie said.
"I do want to make it clear that we are not aiming to create a negative environment regarding progress of moving drugs toward the approval process. Only to work together to spread awareness that SMA patients urgently need access to this successful treatment," Katie said.
According to Katie and literature she provided from CureSMA, there are ways that have been established by the FDA to speed up the drug-approval process for rare and terminal diseases.
A petition to request that the drug companies take full advantage of the FDA's fast-track designation is located on change.org. Wyatt -- and tens of thousands of kids like him -- need you to sign the petition. An easy link to the SMA petition is at thefastmovement.org/petition.
"We have gained some serious momentum since we started with already 100,000 signatures," Katie said. "We just really need a unified front to encourage the drug company to work as hard as possible to grant our kids this medicine as quickly as possible. We are hoping to raise as much public awareness as possible to the fact that there is a successful treatment for SMA, and all patients need access."
Alline Kent can be contacted at allinekent@cox.net or 396-2467.