PITTSFORD — In the basement of a special child-care center that serves medically fragile children, a small group of children sat on the floor, eagerly waiting for their turn to make music on the touchscreen of a tablet computer.
The children — who were flanked by caregivers including teachers, therapists, aides and volunteers — have various conditions that cause such things as sight, mobility, growth or speech impairments.
But during music therapy, the children’s glee at making music outshone any challenges they had. For instance, one boy eagerly kicked his legs out from his wheelchair when it was his turn to use the computer screen.
It’s all in a day’s work for Daystar for Medically Fragile Children, a child-care center started by the Sisters of St. Joseph in 1988 to serve foster children born to drug- or alcohol-addicted mothers. Since then, Daystar has grown into a facility offering child care and respite care for children with complex medical needs.
The facility has been so successful that it has outgrown its space, and it is building a larger home at 700 Lac De Ville Blvd. in Brighton that is scheduled to be complete by January 2013, according to Daystar Executive Director Natalie Anderson. The new 11,000-square-foot facility will allow Daystar to triple its current capacity. The organization currently offers full- and part-time care to 15 to 18 children, but the new $2.2-million facility will allow it to serve 45 infants, toddlers and preschoolers on a full- and part-time basis. Architects divided up the facility to maintain Daystar’s homelike atmosphere, Anderson said.
"It will be in a bigger space and will accommodate three times as many families, but it will not feel like an institution," she said.
Although the agency originally started out serving foster children, about 10 years ago neonatal nurse Mary Erturk began volunteering with Daystar and conveyed the need for a child-care center for infants and toddlers with complex medical needs, Anderson said.
Erturk, who retired in 2009 as Daystar’s program manager, helped found the child-care program that offers on-site nurses and specialists in feeding, physical therapy and special education, among other disciplines.
"It’s just grown exponentially over the years," Anderson said. "It’s very unique. There’s nothing like this in New York state."
Until recently, Daystar served children from birth through 3 years old, with a lengthy waiting list, but Anderson said many parents struggled to find another child-care program after their special-needs children aged out of the Daystar program. With the upcoming expansion, Daystar is now able to serve children until age 5 and has changed its name to emphasize that it serves children, instead of solely infants, she said.
The children at Daystar have conditions ranging from spina bifida — affecting one in 2,500 people — to Dandy Walker syndrome, which affects one in 25,000. There is even a child with Mowat-Wilson syndrome, which is so rare that only 170 people have been reported in history to have had the condition.
Anderson said the children at Daystar live with such joy and teach their teachers about quality of life.
"People say it must be so depressing to work here," Anderson said. "It’s the opposite."
Thanks to the help of volunteers and donations from the community, Daystar charges families $185 a day for direct care, which Anderson notes is a small amount compared to the full cost of the services offered. Among the organization’s many supporters is Katie Shirley’s Closet, a store in Fairport that sells handmade jewelry and accessories and donates its proceeds to Daystar, and the Rochester gift shop The Generosity Store, which sells jewelry from Katie Shirley’s Closet to benefit Daystar. The Sisters of St. Joseph also supports the agency, although it is now separately incorporated, Anderson said.
Many people also have contributed over the years to scholarship funds to make Daystar affordable for families.
"We work with a family to make (the cost) reasonable based on their own financial circumstances," Anderson said. "We certainly don’t want that to be a factor in terms of why somebody doesn’t attend."
A family who has benefited from Daystar said the agency is worth every penny.
Carleen and Dave Fallone of Penfield, who attend St. Joseph Church, said Daystar helped them when they needed assistance caring for their daughter, Mia, who was born with hydrocephalus, a build-up of fluid in the skull, and a series of organ malformations known as VATER syndrome. In the first 13 months of her life, Mia underwent seven surgeries and began going to Daystar one day a week when she was 10 months old to allow the Fallones to have a day’s respite.
"By the time she started at Daystar, she was still very fragile, but she had been through the worst of it," Carleen Fallone said.
Now a preschooler, Mia goes to school with her twin sister, Gabriella, in a class that is made of children with and without special needs. Mia’s success is evidence of the benefits of Daystar’s services, her mother said.
"Because (Daystar) is so small and can only accommodate a few families, there are a lot of folks that are missing out," Carleen Fallone noted. "For us, it is something we will always feel indebted to."
Watch the video below to learn more about Daystar and the children they help.