Meghan and Robert Castle know their 5-year-old son with severe mental and physical disabilities will always need constant care.
But that doesn’t mean their blond-haired, blue-eyed Gabriel, who loves toy trains and hummus, can’t lead as normal as a life as possible.
“I want to go to the park and play with my brother. Mommy would not have to struggle so much if we had stuff to help Gabriel,” said Serenity, Gabriel’s 7-year-old sister.
To make that happen, the family needs a motorized wheelchair and adaptive van to give Gabriel the mobility to travel. Going anywhere right now — to Publix or to one of the regular physical therapy sessions — is a significant struggle.
“It’s hard on us all. As he gets older, it’s going to get harder,” said Meghan, who works for a real estate title company.
Gabriel has arthrogryposis multiplex congenita, a disorder that affects about 1 in 3,000 live births. Gabriel was born with severely clubbed feet, left hip dislocation, contracted knees and low muscle tone throughout his body. He will always need braces to walk. He’s endured 15 operations.
A recent psychology evaluation determined that Gabriel has developmentally aged about 12 to 24 months. The chances of him catching up to his peers are low, say doctors.
That doesn’t stop Gabriel from smiling.
Gabriel says “Doctor”and points when a visitor greets him in his family’s Jupiter home off Delaware Boulevard. “Doctor” is one of the about 300 words Meghan figures her son can say. He understands more.
It’s not enough.
“He tells me what he wants. Like a toy. Or a banana. But he can’t tell me his needs. Like where it hurts. That breaks my heart,” said Meghan. As she talks, she dips Veggie Straws into a tub of hummus to feed her son fidgeting in his high chair.
The family hopes a donation to provide physical swimming therapy will improve Gabriel’s mobility. Gabriel stopped the sessions when the family could no longer afford them.
“He was building muscle. He loved it,” Meghan said.
Gabriel shares a bedroom with Serenity. His toy train set is on the floor. He has names for the train stickers on the wall. There’s Thomas, Percy, James, Clarabell and — Gabriel’s favorite — Gordon.
Gabriel now has a slanted pillow that he struggles to use to climb onto his bed. If he had a more durable pillow, the climb to visit his trains would be easier.
“He talks to his trains. He pulls the train stickers off the wall. Then, he puts them back,” said Meghan. “That’s good for him. It builds the dexterity in his fingers.”
Gabriel Castle, 5, has arthrogryposis multiplex congenita, a disorder that affects about 1 in 3,000 live births. Gabriel was born with severely clubbed feet, left hip dislocation, contracted knees and low muscle tone throughout his body. He will always need braces to walk. He has endured 15 surgeries, and faces more. He has the mental capacity of a 2-year old. Gabriel’s parents say a motorized wheelchair and adaptive van that would give Gabriel the mobility to travel. He also could use special “positioning” chairs, physical therapy toys and aqua therapy. The equipment would also give the family more freedom to travel like a regular family.
Photography by Greg Lovett / Staff
Nominated by Clinics Can Help