Two-year-old James Andrew Bonneville tends to stop breathing in the middle of the night.
It’s one illness in a list of many that has forced his mother to quit her job, live on four hours of sleep, split time with her other children and turn in desperation to what she sees as the family’s only salvation – a home for medically fragile, technology-dependent youngsters scheduled to open this year in Smithtown.
“The strain of not knowing when you don’t have a nurse, if you’re going to find him cold in a crib,” the toddler’s father, Martin Bonneville of Miller Place, said. “It’s an amazing thing to have hanging over your head for two years.”
James is one of seven children chosen from an expanding waiting list to live in Angela’s House II on Brooksite Drive – only the second of its kind in New York. At a groundbreaking ceremoney Friday, his family gathered among politicians and local activits to celebrate what’s been more than a decade in the making.
The first home, Angela’s House in East Moriches, came about in tribute to Bob Policastro’s daughter Angela, whose death in 1990 at the age of 13 months in a Connecticut institute spurred him to fight for homes locally.
“For so long I was alone in this,” said Policastro, of Hauppauge, adding that now he’s found support in the local community and State Legislature. “It’s really overwhelming. It’s beautiful.”
One person credited with securing funding is state Assemb. Harvey Weisenberg (D-Long Beach), whose son Ricky is severely disabled. He received bipartisan support after expressing dismay at “exporting” disabled children to out-of-state facilities.
“I said, ‘We have to bring our children home,’ ” Weisenberg told the gathered group. “They’re not just children that have tubes in them…”
For 7-year-old Victoria Bingham, who is severely retarded and has daily seizures, Friday was a chance to practice taking some of her first steps.
“They told me she would never walk,” said her mother, Anne Bingham, her arms outstretched ready to catch an unsteady Victoria. “This is a real miracle, it took seven years.”
While deciding to send Victoria to the home was heartbreaking, she said, it would be unfair if she did not. They’ve grown accustomed to leaving soccer matches early because of seizures.
Officials with Independent Group Home Living Program, which is sponsoring the home, said they expect it to open by year’s end.
“We’ve been waiting for this,” said Bingham, of East Northport, adding that she finds comfort in thinking of it as an elite boarding school. “We’re going to be here every day. We’ll be tucking her in at night.
By Theresa Vargas
Newsday (June 7, 2003)