Berkley family gives thanks for wheelchair

FRANK MULLIGAN Gazette City Editor 11/25/2003

BERKLEY -- One of the first things 12-year-old Jake Nieviera did when he received the special wheelchair that allows him to stand was to give his mom Kelley a standing hug.

"That was one great hug," she said.

Jake was diagnosed with Duchenne's Muscular Dystrophy when he was just 18 months old. It's a progressive, degenerative muscle disease that has restricted his ability to move.

Parents Ken and Kelley Nieviera have fought the disease's advance in Jake and have battled for other sufferers. They staged three walks, from 1998 to 2000, to raise money for the battle against muscular dystrophy, compiling more than $70,000 to wage that fight.

But they found themselves in a new battle for more than a year-and-a-half to get the money they needed personally to buy this special, very expensive wheelchair, recommended by Jake's doctor.

They were first denied any financial help from the state Division of Medical Assistance.

They eventually won that battle on appeal with the help of Taunton attorney Joseph deMello, who also suffers from a form of muscular dystrophy.

They also won their personal battle with the help of the Taunton-area community -- help they very much wanted to acknowledge in this season of Thanksgiving.

"We wanted to say, 'thank you. Here's the wheelchair,'" Kelley said. The battery-operated chair can reconfigure into a standing position for Jake at the touch of a control -- a position he must assume daily to stretch his muscles, improve his circulation and avoid sores from immobility.

They staged a fourth, 2-mile "Walk for Jake" from Morton Hospital and Medical Center on June 1 -- this time to raise money for the wheelchair as well as to help cover the tremendous expense to make their home fully accessible for Jake.

The weather was the poorest it's been for any of the four walks -- rainy and cold. But the people -- 250 of them -- came and made it a success. The family was able to put $5,000 toward the chair. The Muscular Dystrophy Association helped out with $2,000.

Despite having to deal with his affliction, Jake's a fairly typical-seeming 12-year-old sixth grader from the Berkley Middle School. He has his peer group's fondness for video games and owns a friendly 7-year-old beagle named Barney.

But he's also got a precocious love of classical music, particularly Vivaldi, and an inexplicable rooting interest in that baseball team from New York that isn't the Mets.

His favorite part about his "cool" standing chair is it allows him to "get on eye level with people."

"It's wonderful," his dad Ken said. "He's been so much better since he's had this wheelchair. It's unbelievable. Being able to stand is something we all take for granted."

Ken and Kelley are inundated with good wishes from friends and friends of friends as well as requests for updates on the chair's purchase. It was delivered at the end of October, and the Nievieras "wanted everyone to know where their effort went," Kelley said.

Their help "is what keeps us going," Ken said.

©The Taunton Gazette 2003