Spinal muscularatrophy afflicts Chloe, many others
Two-year-old Chloe Bush likes for people to read books to her. She's a huge fan of Elmo from "Sesame Street" and likes "Veggie Tales" and "Wonder Pets." An August fundraiser in Madison will help raise awareness and hopefully aid in finding a cure for Chloe's disease, spinal muscular atrophy.
Robin Stoner is a close friend of Chloe's parents, Joe and Jennifer Bush of Huntsville, and is coordinating "Walk-n-Roll for Chloe." The fundraiser is affiliated with Families of Spinal Muscular Atrophy. The event is scheduled for Aug. 1 from 9 a.m. to 2 p.m. at Dublin Memorial Park. FSMA is a nonprofit organization that supports research for spinal muscular atrophy and helps families affected by the disease.
Spinal muscular atrophy attacks the muscular system in a child's body. The brain is not affected. "It's the number one genetic killer in infants and toddlers," Stoner said. One in 6,000 babies is born with this disease, and one person in every 40 is a carrier.
"Any business that would like to help could donate an item for the silent auction on the day of the walk or donate directly can visit our Web site, www.fsma.org/chloeswalk2009 ," Stoner said. "Chloe is a beautiful little girl that will steal your heart," Stoner said. Chloe has one sister, Abby Brock.
When Chloe was 6 months old, her pediatrician noticed her reflexes were abnormal.
"He first diagnosed muscular dystrophy and set up an appointment at Children's Hospital of Alabama in Birmingham. There, Chloe was diagnosed with spinal muscular atrophy," Stoner said.
Two days later, Chloe experienced respiratory failure and was placed on a ventilator and gastronomy tube at Huntsville Hospital. Back at Children's Hospital, Joe and Jennifer Bush learned to care for the tracheotomy and feeding tube.
"Chloe was given only a 20 percent chance of living until two years old," Stoner said. "She has surpassed this and will be three in September."
The disease prevents a child's normal mobility, such as lifting the head, rolling over, crawling, sitting up, swallowing, even breathing. Fortunately, Chloe is not in pain.
Stoner encourages Madison residents to help with the fight for a cure.
"You can be at Walk-n-Roll for Chloe. Tell everyone you know," she said.
Registration fees are $15 for 13 years and older; $5, children 3 to 12 years; and no charge for children two and younger. Registration fees include a T-shirt.