Allison Kerns is only 3 years old, but she's already a spokeswoman. The precocious preschooler has spinal muscular atrophy, a neuromuscular disease that keeps her mostly limited to a motorized wheelchair.
She was recently named the Florida State Goodwill Ambassador for the Muscular Dystrophy Association. She'll travel throughout the state along with her parents, Michael and Katie Kerns, to meet volunteers and help educational and fundraising campaigns for the association. On Thursday, Allison was recognized as a Sunshine Ambassador by the St. Petersburg City Council.
She was first diagnosed with the disease in 2007 when she was 15 months old. Her mother noticed there were some developmental delays with her motor skills. A physician recommended blood tests.
The results horrified her parents and left them briefly discouraged. But then they became proactive. "It's every mom's worst nightmare," said Allison's mother. On the Web site they've founded for Allison, she admits that the diagnosis dealt a stunning blow.
"It took Michael and me a good year to accept all of this and make it a way of life. We each, individually, had to go through our grieving process. We grieved for all the things we had hoped for and had wanted for our daughter and family," wrote Katie Kerns, who is a stay-at-home mom.
"But we did some research and got active in MDA," she said.
Every three years the association provides $2,000 toward the cost of a wheelchair for Allison.
But a motorized chair is not covered by insurance, so they've relied on fundraisers. Each chair costs roughly $20,000. "We've had to fundraise and really rely on the community," said her mother.
She'll need a new one in four years. Different charitable groups assist, including the St. Petersburg Association of Firefighters. Last year the firefighters raised more than $25,000 to contribute to muscular dystrophy causes.
In the Tampa Bay region, the MDA serves more than 1,200 families. Last year the annual national telethon, sponsored by renowned actor Jerry Lewis, raised more than $64 million to benefit MDA research and families. Each year he sings the classic inspirational tune, You'll Never Walk Alone.
"All donations in the Tampa Bay area stays to help local families," said Jennifer Bell, district director for the group.
Despite some of her limitations, Allison is still very much a playful kid. An only child, she enjoys frolicking with her cousins. She's quite mobile in the wheelchair and likes to jet around. Instead of hopping on a tricycle with her playmates, she'll push them along in her motorized wheelchair, pretending they're riding on trains.
She watches television programs on Nickelodeon like Max & Ruby. Her McDonald's Happy Meal of choice contains Chicken McNuggets, not a cheeseburger.
While her parents realize that people with the disease can have a severely curtailed lifespan, they're optimistic. They check on new treatments and attend conferences for news on the latest developments. They hope stem cell research will one day yield a cure.
"I want her to be as independent and happy as she can be. I know it's possible," said her mother.
Austin Bogues can be reached at firstname.lastname@example.org or (727) 893-8872.