Last September, doctors diagnosed Holly with SMA, a motor neuron disease which affects the voluntary muscles.
A Lamar couple says they knew something wasn't right with their baby, but just assumed she was delayed in her development. They later found out their baby girl suffered from an incurable muscular disease called Spinal Muscular Atrophy or SMA.
Christie and Marty Tolson have a full-time nurse to help them with their 20-month-old daughter, Holly because she requires around-the-clock attention.
Last September, doctors diagnosed Holly with SMA, a motor neuron disease which affects the voluntary muscles. Holly can't crawl, walk, control her head and neck or swallow.
The couple knew something wasn't right with their daughter, early on. She wouldn't put any weight bearing on her legs at all. We kind of just putting it off thinking she was just lazy," Christie said.
As time went on, the Tolson's had to confront fears. They said one of the hardest parts about dealing with Holly's SMA was breaking the news to her 10-year-old brother, Zack. "We had to tell him that his sister may not live to see her second birthday," said Christy, "And that she would have all these machines to help keep her healthy and lungs clear."
Eight machines help keep Holly alive. A special vest shakes her to break up mucus in her body. She's fed through a tube three times a day and overnight. Holly also takes medications and vitamins by way of the tube. "She has physical therapy. She has water therapy. She has speech therapy and occupational therapy," Christie explained.
And when all the therapy is over, Holly gets to play with some of her favorite toys. Because she's so weak, the toys require only a gentle touch to operate. Holly's parents want others to know that if you sense something is wrong with your child, get them examined.
There is no cure for SMA, but the Tolson's aren't giving up. "There's hope. There's hope for Holly and other children with SMA," Christy said.
One in every 6,000 to 10,000 babies is born with SMA.
