For 25 years, Hauppauge resident Bob Policastro has made it his mission to give medically fragile children and their families a place to turn to — not just for specialized nursing care but love and normalcy.
As founder and executive director of Angela’s House, a nonprofit organization that offers an extensive array of services for families to support children with severe medical conditions, the 57-year-old has worked tirelessly since 1992 to address the gap in New York’s health care system when it comes to helping chronically ill kids.
He said he was determined to be a voice for these parents and kids in the community after experiencing firsthand just how underhelped they are.
When his daughter, Angela, was born in August 1989, Policastro said everything went wrong.
“She lost a lot of blood and oxygen, and suffered severe brain damage, that left her very frail,” he said.
As there had been no permanent place on Long Island equipped to handle the technological and medical needs of frail children, Policastro and his wife, Angie, had a tough time finding a specialized home or facility to provide their daughter the nursing care she desperately needed.
They ended up finding a specialty hospital two and a half hours away in Connecticut, but the long drive just to see his daughter left an emotional and physical scar on Policastro.
After Angela died a little after her first birthday, a grief stricken Policastro got to work.
Now there are three large group homes that look and feel more like cozy resorts to choose from, with Angela’s House locations in East Moriches, Smithtown and Stony Brook.
Each location contains 24-hour nursing, local therapists and doctors on hand, and houses up to eight kids between the ages 6 and 16 with varying conditions. The residences offer top-of-the-line medical and monitoring equipment hidden within the warmth and beauty of a caring home.
And although the children that inhabit it are those who have suffered accidents, disease, developmental delays and more, Angela’s House helps provide them the freedom and opportunity to have a simple childhood.
During a walkthrough of the large Stony Brook house, which opened in 2013 and is dedicated to kids who rely on ventilators, Policastro pointed out one of the children’s bedrooms.
It looked like a kid’s paradise, with a bed covered in stuffed animals, the floor littered with toys, Nickelodeon on TV and a window that gives a beautiful view of the property’s nearby woods — a far cry from the hospitals and institutions in which many of the children at the house had been living.
“For me, it’s about the kids and giving them a safe and loving life,” he said. “I feel really blessed that these kids who have been given a limited lease on life can make the most of it in ways the average person could never dream possible, or can touch people in ways that change them forever. It’s remarkable to see a nonverbal kid, [many of house’s children can’t talk], that has a smile that can light up a room. It’s a great responsibility and I feel honored to be put in a position where I can try to help as much as I can.”
Deborah Church, nurse manager at the Stony Brook location who does everything for the kids from providing medical stability to planning birthday parties to giving them a hug when they need it, said Angela’s House is the best place for these children to be if they can’t be home.
“It’s nice to have the parents smile and know they can go out and have a life, and come and visit their children and see they’re so happy, safe and well taken care,” Church said. “This is a happy home for them to live. These kids can be as normal as possible and always have a smile on their face.”
Gathered around a kitchen table, Policastro and Church talked with 15-year-old Torren, who had been confined to a hospital and nursing home for the first 12 years of her life because of a respiratory illness, about her Sweet 16 next month. Torren will wear an extravagant dress, dance to her favorite band, OneRepublic, and eat nachos with her friends at the house.
Torren, who wheels her ventilator around inside a travel suitcase in order to feel less self-conscious about her condition, said her favorite parts about living in the house are the staff and outings — which include trips to the bank and local stores, as well as pumpkin patches in the fall.
Stephanie Caroleo has been working at Angela’s House for six years.
“The most rewarding aspect is when you come to work and you truly feel like you make a difference every day,” she said. “Every day we make a difference in the lives of these kids, and you see it in their face, in how they speak with you and the relationships we develop.”
When asked what’s kept him motivated for the last 25 years, Policastro pointed to Ella, a little girl in a wheelchair smiling from ear to ear. “That,” he said. “It doesn’t matter what mood you’re in, if you bump into one of these kids and you see that smile, oh man, that’s golden.”