- November 23, 2024
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Brian Castillo reaches down from his wheelchair to pet his English Bulldog, Leah. When he sits back up, he slouches, as the wheelchair doesn’t support the top of his back anymore. His legs have become too long for it. As a 10-year-old Palm Coast resident living with cerebral palsy, Castillo spends most of his time in this wheelchair, yet it does not fit him anymore.
“There aren’t really any people like me, which means I’m a rare type of kid,” Castillo said.
Castillo was born 28 weeks premature and spent his first three months of life in a neonatal ICU. Now, three days a week at 7:30 a.m., Castillo’s mother, Dawn Martinez, takes him to physical therapy before work.
Martinez she said she received help a few years ago from Wheelchairs 4 Kids, a nonprofit organization based out of Tarpon Springs, and it changed everything for her family.
Wheelchairs 4 Kids bought a wheelchair for Castillo in 2013 and is currently trying to get sponsors to fund about $2,000 worth of improvements to the wheelchair to suit Castillo’s needs.
“Sometimes it’s a little different to go out places when you have a kid with special needs because you’re not sure what they can really do or you’re not sure how people are looking at them,” Martinez said. “But then when you get involved in an organization like that, it just changes everything. It’s made him a lot more social in every different aspect of his life. I wouldn’t even want to think about what we’d go through without them.”
Before Martinez found out about the nonprofit, she struggled to save up money to buy her son a wheelchair that would allow him to gain strength by pushing the wheels himself, rather than always using the electronic-powered wheelchair required for school, which insurance covers.
“I was saving for this wheelchair, but when you try to buy it yourself as a person, the amount of money they want is insane,” Martinez said. “So, I was saving and saving, but I wasn’t getting anywhere.”
Bright-eyed with a big smile on his face, Castillo raved about the people at Wheelchairs 4 Kids and the events he gets to participate in through the organization’s Wheely Good Time program.
“Waterskiing is so fun, and WWE, I like,” he said excitedly. “I live for it.”
Wheelchairs 4 Kids Founder and Executive Director Madeline Robinson said when the organization holds an event, Castillo is there ready to go.
Even with the nonprofit’s help, Dawn Martinez said her family still struggles at times. She said sometimes she has to be inventive with equipment because when an item has the words “special needs” in front of it, the price soars.
She held up a piece of plastic and Velcro she combined to keep Castillo’s legs back against the wheelchair. While she made the piece herself from $15 worth of materials, a similar version could be up to $150 in stores, she said.
Maureen Grover, a Palm Coast mother of two children with special needs, deals with the same hassle.
“It’s very frustrating shopping for anything with ‘special needs’ in front of it,” Grover said. “A plastic chair that should cost $25 to $50 costs $200 to $300 because it’s adaptive. It’s the exact same chair. You have to try to get creative at times.”
One of her sons, Brayden, 10, and her daughter, Alaina, 7, both have a recently discovered gene mutation called SLC13A5. The citrate deficiency has affected each kid differently, but both are in wheelchairs and cannot speak.
“Children are resilient. It’s harder for us I think than them because they always come out with a smile on their face.”
- MAUREEN GROVER, Palm Coast mother of two children with special needs
While the family sat in their living room, Maureen’s oldest son Landon, 11, helped readjust his little brother’s and sister’s positions in their wheelchairs, which were bought by Wheelchairs 4 Kids.
The growth and improvement adjustments for the Grover kids’ wheelchairs have already been made in advance, but Wheelchairs 4 Kids is looking for sponsors to support the costs of the $2,495 improvements made to Alaina’s chair and the $2,697 improvements made to Brayden’s chair.
Grover found out about the nonprofit in 2016, and said she’s thankful for their help ever since.
A few years ago, the Grover siblings became two of the first in the nation diagnosed with this deficiency. So, for the first several years of their lives, Grover didn’t know what was wrong with her children — why Brayden was in a coma at three weeks old, why he would have thousands of seizures a day, why Alaina had to have a craniotomy, why she spent five months in intensive care, why both can’t walk or talk.
“Doctors would say to me, ‘There’s no reason. Sometimes there’s just no reason for seizures,’” Grover said. “And I would say, ‘There is absolutely a reason for everything. You just don’t know it at this point. But we’re going to keep looking until we get our answers.’”
Finally, she got her answer.
“The part that’s bittersweet with this is now that we have a face and a name for what’s causing this, there isn’t a treatment,” she said. “We’re just treating the symptoms.”
While her kids have endured a lot, she said they’ve pushed through.
“Children are resilient,” she said. “It’s harder for us I think than them because they always come out with a smile on their face.”
Grover said even though Alaina is 7 years old, she is more of an infant who’s unable to even support her own head. But she always has a smile to share.
“(Alaina’s) very socially aware of who’s around her and is very happy and very loving,” Grover said.
Brayden doesn’t walk, but he can stand up in his chair sometimes, she said. She hopes he’ll walk one day.
“He stands, and I think he will walk because he’s just determined,” she said. “He loves watching his big brother cruise around the house.”
In addition to taking care of her children, Grover gives back as a parent adviser with The TESS Research Foundation, which allows her to help other families struggling with similar situations because of this new genetic mutation.
“It’s funny how you try to help your child and it ends up sort of helping other people too in the meantime,” Grover said.
