Tee Off for Ciara
She’s a tiny thing, with a mass of blonde hair swept up on top of her head and cornflower blue eyes behind wire-rimmed glasses. You’d never know to look at Ciara Kelly Higgins that she was just a few weeks out from an operation where a drug pump the size of a hockey puck was inserted in her abdomen and her hamstring and calf muscles cut.
With her right leg in a cast (covered in pink with, she points out, precious Jonas Brothers autographs she got during a backstage visit), she can motor using just a walker.
But she’s had lots of practice. The fourth child and only daughter of Tom and Dee Higgins of Lafayette Hill, Ciara was born at only 26 weeks, seven years ago. But she was 2.2 pounds of fighter.
“She spent four months in the Jefferson Hospital NICU [Neonatal Intensive Care Unit] on a ventilator,” says her dad, a Galway-born realtor who is active in the Philadelphia Gaelic Athletic Association. “It wasn’t until she was almost two that she was diagnosed with cerebral palsy. We just chose to fight it. Ciara has an indomitable spirit that wants to fight—just ask her brothers.”
That would be Tom, 16; Conor, 14, and Ronan, 11.
To help her along, her parents launched a golf fundraiser five years ago to help pay for some of her therapy and to support places like Jefferson and Shriners Hospital that specialize in children with disabilities. They also donate to Sebastian Riding Associates in Collegeville where Ciara gets an unusual form of therapy—hippotherapy, from the Greek word, hippos, meaning horse.
Hippotherapy usually takes place in a controlled environment where therapists use the movements of the horse to help children improve their balance, posture, mobility and function.
“It’s really worked for Ciara,” says Higgins. “It’s keeping her core muscles strong and helping her stay upright. She hunches over on the walker and the crutches and this helps her stand upright. It’s also made her more confident.”
At first, Higgins said, he thought having four people surrounding Ciara while her horse walked around the ring “was overkill.”
“Then one day she got thrown, and by thrown I mean 10 feet in the air, and one of the women caught her,” he says. “I never thought of it as overkill again. They put her on another horse and she never said anything about it. When they say you should get back up on the horse—she did.”
This summer’s operation should nudge Ciara further along towards her goal—to walk unaided or virtually unaided. The pump in her stomach will send a constant dose of Baclofen, a drug used to treat spasticity, to her affected leg to keep the muscles and ligaments loose.
“She’s very tight and she couldn’t get her heel on the ground to walk properly,” says Higgins. The operation appears to be successful: Ciara’s heel does touch the ground. “She just won’t put it down,” he says. “She hasn’t been able to put it down so it must feel funny to her. But now it can also be manipulated in therapy.”
The other half of the operation—cutting her hamstring and calf muscles—sounds like torture, but it too will relieve the tightness.
Her prognosis, says Higgins, is anyone’s guess, and the experts aren’t making any guesses. “They say that no two cases are alike and they’ve never seen her exact condition before. Technically what she has isn’t cerebral palsy, because that usually affects two legs and only one of hers is affected.”
But if anyone is going to walk, Ciara is. “She’s very stubborn. Even in the hospital when they were measuring her for a wheelchair she was saying, ‘No, don’t do that. I’m not going into a chair.’ They finally convinced her that she would be able to go more places and she went for it,” says Higgins, laughing.
But when you’re facing a tough battle, as Ciara is, stubborn is just another word for determined. And that’s a good thing.
The Fifth Annual Ciara Kelly Higgins for CP Fundraiser is scheduled for Monday, September 20, at the Plymouth Country Club at Belvoir and Plymouth Roads, Norristown. Breakfast starts at 7:45 AM and tee times follow throughout the morning. Dinner is at 6 with music provided by Paddy’s Well and some comedy from Joe Concklin. There will be both live and silent auctions.
If you can’t make the event, you can send a donation to Ciara’s parents, Tom and Dee Higgins, 4027 N. Warner Road, Lafayette Hill, PA 19444.