By Staff
Melissa Cason, Franklin County Times
A local family is urging everyone to contact his or her representative in Congress to support legislation to fund research for a newly diagnosed terminal illness.
Scotty and Dawn Bundy of Russellville know first-hand what it is like to have a terminally ill child. Their 10-month-old son, Aiden, was diagnosed with Spinal Muscular Atrophy (SMA), a genetic disease that damages nerves from the spinal cord causing the patient to lose control of his muscles including vital organs such as the lungs.
Bundy said that they were told Aiden was a healthy baby boy at birth, but learned four months later that he may not live to see his first birthday.
"They told us to take him home and make the most of his life because they didn't know how long he was going to live," Bundy After the diagnosis, the Bundys found a doctor at Children's Hospital in Birmingham to help treat their son.
"Our doctor believes that Aiden is going to do what Aiden is going to do, and that all babies are different and respond to the disease in different ways," Bundy said.
While SMA is a debilitating terminal illness, the Bundys have had to fight to ensure that their son receives proper medical care because of insurance carriers' refusal to pay for needed medical supplies.
"This is a new disease, and there is not a lot known about it so insurance refuses to pay for medication and supplies even though he needs them," Bundy said. "It's a fight just to get him the things that he needs to live."
Aiden is currently on a BYPAP machine to help him breathe when he sleeps and a cough assist machine to help clear his lungs of fluid daily.
While the infant can smile and is trying to talk because the disease only affects his muscles, he can't move his limbs or even hold his head up, and he is fed through a feeding tube instead of a bottle like most babies his age.
While the Bundys are trying to cherish every second they have with Aiden, they are urging everyone to learn more about SMA and to learn more about the SMA Acceleration Bill that was introduced to the U.S. Senate in September by Sen. Debbie Stabenow of Michigan.
Bundy said that bill will help provide funding to research the disease so that drugs can be developed and a cure can be found some day.
"All of the research is being privately funded, but this bill will give money to help find a cure so that babies like Aiden won't have to die," Bundy said.
The Bundys don't know how much time they have with their son, but they do hope that more will be learned about the disease and that research will be funded to develop treatment or a cure.
For more information on SMA, visit www.fsma.org