Walls go up to free toddler

Grace Peshkur was stuck inside her Holtsville home

almost 24 hours a day, and every day that went by, the 3-year-old grew more

resentful at the walls surrounding her. The bathroom could not accommodate her

wheelchair, and the living room where her bandages were changed was nothing

more than a constant reminder of her pain.

Now the toddler, who suffers from a rare skin disorder, is just months away

from getting a new home, one that her parents hope will give her some peace

from the constant anguish of her illness.

"Why should a child be limited in her house," her father, Michael, said

yesterday as he watched volunteers attach plywood to the wooden frame of the

new home. "We want her to be a part of the house. Right now she's excluded from

it."

Yesterday, clutching a small brown teddy bear in her blistered hands, Grace

watched from her wheelchair as volunteers worked on her new home.

The 4,000-square-foot house was designed by AML Architecture of Southampton

and is being built by E.W. Howell Co. Inc. of Woodbury. The dwelling, which is

five times the size of her previous house, will include a separate room for

changing Grace's dressings and her own bedroom that will look out into a

garden, which is important, her parents said, because she must remain indoors

most of the time.

Grace was born with epidermolysis bullosa, a debilitating genetic disorder

that occurs once in every 50,000 births. The condition, which has no cure, is

characterized by painful blistering both inside and outside the body that can

erupt from the slightest touch. She is covered in gauze to help prevent

infection, and her dressings must be changed daily.

But room in her parents' 800 square-foot house was scarce and the couple

sought help in building an addition that would accommodate Grace's needs. The

couple applied to ABC's "Extreme Makeover: Home Edition" but were rejected. "We

were devastated," said Grace's mother, Karen, 31. "We were in no financial

position to give Grace the home that she needed."

That's when AML stepped in, followed by E.W. Howell, doing all the work for

free.

"It's an honor for us to do this," said E.W. Howell president Howard

Rowland. "You don't get the chance to make this kind of a difference too often."

The company knocked down the old house and since October has been building

on the site. The new house, which the company estimates to be worth about

$350,000, is due to be completed in April. Grace's condition will only worsen

with age, and she may not live past 20. The family, temporarily living in

Smithtown, visits the work site every day to see the progress and to dream,

Karen said.

"This is really pulling us through some tough times," she said. "It's

giving us hope and something to look forward to."