December 27, 2016
PHOTO BY PAULA MULLER
Jed Leonard helps his daughter Abigail have a snack of yogurt at their home in Saugus. They are hoping to get a new wheelchair van to transport her.
By BRIDGET TURCOTTE
SAUGUS — For 9-year-old Abigail Leonard, who was born with a medical condition called FOXG1 syndrome, a new van isn’t a luxury. It’s a necessity.
Abigail cannot sit or walk independently, is nonverbal, has reflux and uncontrolled epilepsy. She uses a wheelchair and is legally blind.
“Right now we lift her out of the wheelchair and put her in her carseat,” said her mother Jennifer Leonard. “But she’s getting taller and heavier. She’s going to keep getting bigger. We’re sort of contorting her and it’s not comfortable for her.”
When Abigail was born, she appeared to be healthy, Jennifer said. By the time she was nine months old, she did not sit independently and her eyes crossed more than normal. Abigail was initially sent to a pediatric eye doctor, who ordered an MRI of her eyes and brain that revealed a deeper problem. She began early intervention services, physical and speech therapy and occupational therapy. Until she was finally diagnosed in 2013, her parents went five years without an answer for their daughter’s illness.
She now sees 12 specialists and goes to rehabilitation at least twice each month in Boston.
Abigail grew four inches in the past six months, which led to a few health complications, including uncontrolled seizures.
The van they drive now has collected almost 171,000 miles and been subjected to a lot of wear and tear.
The air conditioning doesn’t work, which can be dangerous for Abigail, who has trouble regulating her body temperature, said Jennifer. During the summer months, the family traveled in Abigail’s father’s car. Jed Leonard drives a smaller SUV that isn’t large enough to fit Abigail’s wheelchair.
The passenger side door no longer works, forcing the parents to load and unload her on the driver’s side of the car.
“It can be dangerous, especially when we’re dropping off at school,” Jennifer said.
It also prevents them from easily placing her on the passenger side of the car, which makes it more difficult to keep an eye on her in the back seat.
They visited a dealership in New Hampshire that specializes in customizing vehicles for accessibility. Abigail sat in several different models and the family decided their dream car is the Honda Odyssey, with an expected price tag of $60,000 after adding a ramp and other conversions.
“Space-wise, the Odyssey was the best for us,” Jennifer said.
The costs of rehab, living expenses, home modifications, medical appointments, nursing care and medications make it difficult to save money for a new vehicle, said Jennifer.
Her family invested in a wheelchair ramp outside her house this past summer. The town has a new handicap-accessible playground at the Veterans Memorial Elementary School, where she attends third grade five days a week. The school also raised $1,500 for the family through an event in November.
“It was packed and it was a rainy night,” Jed said. “The community always comes out to help. We’re relying on our local community to help us out.”
Donations can be made online at https://helphopelive.org/campaign/10922.
Bridget Turcotte can be reached at firstname.lastname@example.org. Follow her on Twitter @BridgetTurcotte.