Fund-raiser to focus on disabled child

SPRINGFIELD - A Forest Park family in need of a wheelchair-accessible van for their disabled daughter is turning to the community for support.

The "Wheels4Sophia Cerasa" fund-raiser, to be held Nov. 8 at the John Boyle O'Reilly Club, will help the family replace their Honda Accord with a larger vehicle to accommodate 4-year-old Sophia's new wheelchair.

Sophia has lissencephaly, or "smooth brain," and microcephaly, or "small brain." Because her brain did not form properly in the womb, Sophia suffers from cerebral palsy and epilepsy and is legally blind.

"She can't talk or walk or stand or sit up on her own," said her mother, Kristin A. Cerasa. "Last October, she got a G-tube (gastric feeding tube) because she is no longer able to eat by mouth, and she has gained 14 pounds."

The weight gain put Sophia at about 40 pounds, causing her to outgrow her adaptive stroller, which Cerasa said is what disabled children use before they use a wheelchair.

"We went to try (a wheelchair) out to see if it would fit in our Honda Accord, and it doesn't," she said. "With her getting bigger and bigger, it just makes sense to get an adaptive van."

Without a van, Cerasa said they would have to take the wheelchair apart to fit it in the car, creating a problem when Sophia's nurse comes along with them on outings.

"We need it to get around," she said. "That is her mobility."

It's getting difficult and physically exhausting for Cerasa and her husband, Marc J. Cerasa, to carry and transport their daughter, and a wheelchair will make that easier.

Sophia attends preschool twice a week at Prelude Preschool of the Arts in Springfield, attends therapy sessions twice a week in Northampton and visits various specialists throughout the state. She also participates in therapeutic horseback riding and swimming.

Cerasa said she and her husband will be looking for a used van, ideally with the equipment they need already in it. She said she is hoping to get a loan from Easter Seals, which typically has a lower interest rate and a longer loan period than conventional loans. The family will likely use any money raised through the fund-raiser for the down payment on the van.

The family was about to start looking for a larger vehicle a couple of years ago. Their first daughter, Olivia, suffered from the same conditions Sophia has, and at 4 years old, was outgrowing her adaptive stroller. Like Sophia, Olivia had a compromised immune system. She died at age 4 after being exposed to a virus that caused her to suffer heart failure.

Cerasa said Sophia is at risk for serious complications from such common illnesses as the flu.

"When they talk about the H1N1 virus and the people that are susceptible to it, if Sophia caught it, she could very easily die from it," she said.

Cerasa said her doctor didn't believe Olivia's conditions were genetic, so no extensive testing was done when she became pregnant again. For now, she's just thinking about today.

"We just try to give her the best quality of life that we can," she said. "We try not to think about, how long do we have? We could have till today or we could have another 10 years. We just don't know."

Wheels4Sophia will take place from 3 to 7 p.m. on Sunday at the John Boyle O'Reilly Club, 33 Progress Ave. The fund-raiser includes a ziti dinner by Lido Restaurant, dessert and coffee, with a cash bar. There will be live entertainment and raffles. Tickets are available by calling Cerasa at (413) 896-0201 or at the door. Monetary donations may also be made directly to the Wheels4Sophia Cerasa Contribution Fund at any Berkshire Bank branch.