Amy and Dustin Chandler were blindsided when their baby, Carly, began having seizures out of the blue at eight weeks. After a year of testing, doctors finally diagnosed Carly with CDKL5, a rare genetic disorder that causes seizures and severe neuro-developmental impairment. Now three, Carly continues to have seizures at least a few times a week and has a number of developmental delays.
When a baby is diagnosed with a serious health condition or impairment, a parent’s world can feel absolutely turned upside down. Yet in spite of the initial shock and often long-term challenges, these parents soldier on, seizing hope and pride from the milestones their children often reach against the odds.
At The Bell Center for Early Intervention Programs in Homewood, Ala., children like Carly receive support in helping to reach those milestones every day. The Bell Center was formed in 1984 and serves children throughout central Alabama with a wide variety of special needs, from cerebral palsy and Down syndrome to autism and rare genetic disorders like Carly’s. Children without a specific diagnosis who show signs of development delay also come to receive therapy.
The center offers a variety of different programs depending on the child’s needs, age, and goals. On a given day, you might see toddlers in an “All About Me” class engaging in group activities as well as one-on-one therapy with staff and volunteers. In another room, infants in “Bright Beginnings” do therapy with staff as well as their parents, who become active partners in their child’s learning. Other programs emphasize music therapy or even focus on specific needs such as feeding challenges. “It’s so comfortable here, because we’ve come to know everybody,” says Carly’s mom, Amy, noting that while Carly is not mobile, she has made great improvements in developing strong neck and trunk control, among other goals.
In fact, from the first day a baby or child arrives at The Bell Center, the staff, volunteers and even other parents provide invaluable camaraderie and support that can feel as important as the therapy itself. The upbeat spirit is contagious, and nobody is viewed as different. “While services are provided to the child, the whole family benefits from The Bell Center’s holistic approach,” explains Jeannie Colquett, Bell Center executive director, adding that the goal is to take advantage of the critical early-intervention window when therapy can have the greatest impact on a child’s future.
From a Dire Prognosis to First Steps
Another child receiving services is Bellarose Smith, whose parents drive an hour from their home in Winfield once a week for her therapy. Now a beautiful toddler with no visible impairments, she was born to a much different prognosis. Within a few hours of her birth, doctors discovered her liver and spleen were enlarged, she was unable to regulate her own body temperature and failed her hearing and vision tests. “A doctor told us she would be deaf, blind, never walk, and require 24-hour care,” remembers her father, Devin. The parents of two older, healthy boys, Devin and his wife, Hollie, were in shock.
As she grew, however, it became clear that the little girl with the engaging personality and determined spirit was going to defy almost her entire prognosis: At 17 months, her organs are no longer enlarged, and her vision is perfect, though she remains deaf in one ear. She plays normally along her peers, communicates a few words both vocally and through sign language, and recently took her very first step on her own. She continues to attend The Bell Center for help with developmental delays related to low muscle tone.
Running for the Cause
Only about 12 percent The Bell Center’s costs are covered by tuition, leaving the bulk to be made up with private fundraising. Events are held throughout the year—many through the Service Guild, a women’s volunteer organization which supports the center—but its largest single source of annual income comes from Birmingham’s Mercedes Marathon every February.
The marathon benefits the center in a number of ways. The Regions Superhero 5K, the weekend’s kickoff event held the day before the marathon, invites participants to select a favorite nonprofit for which to raise money, and many choose The Bell Center. Meanwhile, among the marathon runners Sunday, those spotted wearing the iconic “Bell Runner” shirts are also running for The Bell Center.
This year, among the Regions Superhero 5K runners was Denise Hill, Carly’s grandmother. “It felt great,” Denise says. “I was thinking about her all along the way to the finish line knowing what challenges Carly has to face every day…to be honest, that’s what got me there. And it was very encouraging to see the other Superhero Runners out there, because you knew they were probably also running for children who attend The Bell Center.
“I didn’t have the best race time,” she adds, “but I can say, ‘I did it because Carly is my hero.’”
Regions Bank is a proud sponsor of The Bell Center and the Regions Superhero 5K. Denise Hill is a Regions associate.