Physical therapist Elizabeth Keith (left) attends a fundraiser at Old School Square with Sydney Johnson and Cecilia to help defray the costs of Cecilia’s treatment for cerebral palsy. Cecilia turns 3 this month. Photos by Jan Engoren/The Coastal Star
By Jan Engoren
When Sydney Johnson, 31, went into labor 10 weeks early, nothing about her daughter Cecilia’s arrival went as planned. Cecilia spent several weeks in the NICU, and by the time she was diagnosed with cerebral palsy at age 1, Johnson found herself with almost no guidance.
“We were given no helpful or useful information,” she says. “No resources. We were left to figure it out.”
She and her partner, Rhett Aucoin, 30, signed Cecilia up for occupational, physical and speech therapy, but after a year with no progress, Johnson realized the traditional approach wasn’t working.
Determined to find something more effective, Johnson, a Boynton Beach stay-at-home mom, began researching alternative therapies. She discovered the Adeli Method — an intensive therapy program originally developed for Russian astronauts to counteract the effects of zero gravity.
The method uses an elastic exoskeleton suit that adds vertical load, improves trunk stability, compensates for weak muscle groups and helps the body relearn proper proprioception — the sense of self movement and body position.For children with extreme muscle weakness or tightness, it can help the brain make new connections to the body.
Cecilia completed a three-week session, five days a week, three hours a day, and the results, Johnson says, were “crazy.”
Before the program, Johnson had been in what she describes as the biggest depression of her life, terrified of what her daughter’s future might look like. But within weeks, Cecilia was close to sitting unassisted, was able to pull herself into a crawling position, take steps with a walker, and feed herself finger foods. She also showed improved eye tracking.
“So much progress in such a short period of time,” Johnson says. “It shot me out of my depression.”
But she also knew that without continued therapy, progress could slip away.
The challenge was cost. Even two days a week of therapy quickly became financially overwhelming.
Volunteers Ava Capuano and Rebecca Catey staffed a table at the event, which raised almost $25,000.
To defray costs, raise awareness and help others in a similar situation, Johnson organized a community fundraiser through sponsor Hope Warriors Inc., and her budding nonprofit, Friends of Cecilia, in January at Old School Square, Delray Beach.
Dozens of volunteers in “Friends of Cecilia” T-shirts were out and about lending a hand.
Two of them, Ava Capuano, 28, and Rebecca Catey, 26, who works as a barista at Bond Street Ale and Coffee in Boynton Beach, were staffing the visitors table.
“Sydney is the light in the community,” says Catey. “She worked hard to put on this event and we’re happy to volunteer and raise awareness for her so she can get the help she needs for Cecilia.”
With more than 40 vendors, four food trucks, a Kids Zone and pediatric therapy providers on-site, Johnson raised almost $25,000 out of a goal of $40,000 — enough to support Cecilia’s treatment for the next eight months. She also plans to fund a scholarship for another child to attend an intensive program offering specialized treatment options often excluded from insurance coverage.
Johnson expects to have a 501(c)(3) designation for her Friends of Cecilia Inc., in three to six months, paving the way for another fundraiser.
Cecilia, who turns 3 in March, receives therapy four days a week with Elizabeth “Beth” Keith, 54, at Young Body Rehab in Palm Beach Gardens. Her treatment includes aquatic, occupational and speech therapy. She also has hippotherapy at Vinceremos in Loxahatchee, where she rides a small pony to strengthen her core.
“Cecilia reminds us to slow down and hear the truth behind every voice,” says Keith. “She’s so lighthearted in her observations and comments, I can’t help but be uplifted by her.”
The two have worked together for almost a year on “targeted intervention,” or knowing what to do first that will have the most impact, Keith says.
She looks ahead to preventing future issues such as joint problems or scoliosis, which can result from difficulties in moving.
Despite severe muscle weakness, Cecilia has no cognitive delays, her mother says. She speaks in short sentences —“I take bath tub now, Mommy”— and is, Johnson says, incredibly smart, patient and motivated.
“She wants to be able to walk so badly,” Johnson says. “She loves to work and learn and is eager to do more things.”
For Johnson, the most meaningful part of this journey is watching her daughter’s determination. “It’s the best feeling in the whole world to see her making progress,” she says.
And now she hopes to help other families feel that same hope. By sharing Cecilia’s progress so openly, Johnson hopes other families feel less alone while navigating their own challenges.
Visit hopewarriorsinc.org to learn more about what it does.
Jan Engoren writes about health and healthy living. Send column ideas to jengoren@hotmail.com.
Comments