Family coping with child's illness
By Staff
Melissa Cason
The hearts of Franklin County were warmed by the introduction of little Aiden Bundy last winter.
Sixteen-month-old Aiden, son of Scott and Dawn Bundy of Russellville, suffers from a debilitating and life threatening disease called Spinal Muscular Atrophy (SMA).
SMA is a rare genetic disorder that causes the nerves to kill muscle tissue leaving the patient unable to do simple things such as crawling, walking and talking.
According to statistics, the disease affects one in 6,000 people.
Aiden has the most severe form of the disease, known as Type 1.
He was five months old when doctors at Vanderbilt University Hospital told his parents to take him home and love him because he only had a few months to live.
Now, one-year later, Aiden is still with his parents and is doing well.
"Respiratory wise, he's the best he's been in a long time," Dawn Bundy said.
"We made it through the cold and flu season so he's doing better."
Dawn said Aiden has not been in the hospital since December, but the family takes frequent trips to see specialists in Birmingham to keep up to speed on his condition.
"We take him to the doctor, but otherwise, we have gotten to the point that we can do the exact same thing the hospital will do at home," Dawn said.
"The doctor said it's better that he doesn't go to the hospital to cut down on the risk of infection."
Today, Aiden's SMA has progressed to the point that he can only move his fingers and smile.
He can babble a little, but he cannot talk, his parents said.
His days are spent watching TV and seeing his family.
Machines and medical devices are a part of the toddler's daily routine and schedule now.
Dawn spends day and night with Aiden while her husband, Scott, works.
"She doesn't do anything but stay with Aiden," Scott said about his wife.
"She might get to go to the grocery store if I'm off work, but that's it and that's rare."
While the Bundys are struggling to cope with their son's serious condition, they stay up to date on funding for SMA research hoping that someone will find a cure for the disease and staying in touch with other SMA families as a support system.
"There has been no progress on funding for SMA in Washington," Dawn said.
"Currently the majority of SMA research is privately funded or funded through other organizations like the Muscular Dystrophy Association."
Dawn said there is a vaccine in its experimental stages that lessen the severity of the disease, but it must be administered at birth.
The problem is that most carriers of the disease don't know they are carriers until they have a sick baby.
"SMA is a disease they can't find unless they are specifically looking for it," she said.
Dawn said this is why MDA and Fight SMA, a non-profit organization dedicated to funding research, is working to have all newborns tested for SMA.
"Newborns are not tested for this disease," she said.
"Patients with SMA are diagnosed after they have already begun to have symptoms of it."
Unfortunately, all the funding and testing in the world can't help Aiden because his disease has progressed.
Dawn admits the doctors don't know how long Aiden will be here with them.
"It all depends on how he does during cold and flu season since the majority of SMA die due to pneumonia because their lungs aren't strong enough to fight it off," Dawn said.
The Bundys take it one day at a time.
They feel every day they have with their son is a blessing and they deal with one problem at a time.
When our county was first introduced to Aiden, several fundraising efforts were made to help him and his family.
Those needs remain the same and the family appreciates the outpouring of support they have received.
For more information on Aiden or how you can help with the fight against SMA, visit Aiden's website at www.caringbridge.org/visit/aidenbundy.
