Spotlight on... Pauline Digati-DuFrane
From: East Aurora Advertiser
Back in the 1980s, Pauline Digati-DuFrane of Holland couldn’t possibly have known what her future held. By night, she was blazing trails in the Buffalo punk rock music scene as the lead singer of Pauline and the Perils; during the day, she was getting her bachelor’s and master’s degrees in special education.
But in 2003, when her daughter Sophia was born with severe developmental and medical problems, she would find herself well prepared for parenting Sophia, as well as being the driving force behind the establishment of Sophie’s Club, a state-of-the-art respite center and kids spa for families with special needs children.
Pauline’s pregnancy with Sophia seemed totally normal, but at Sophia’s birth it was obvious to Pauline and her husband, Michael DuFrane, that there were problems. Sophia wasn’t crying, and the nurses quickly scooped the baby up and took her to intensive care.
Doctors told the couple that Sophia was born with trisomy 18, a genetic chromosomal disorder that causes life-threatening medical conditions including congenital heart and kidney disease, holes or clefts in the irises, and more. About half of the children born with trisomy 18 die within a week of their birth.
When they heard the news, Pauline said she and Michael “felt like we were almost in a war zone.” A doctor told them their daughter would never smile, never walk, and suggested they stop feeding her and allow her to die.
Instead, Pauline and Michael fought for Sophia to survive, and Sophia fought, too. She drank breast milk from a bottle, related to people around her, and—despite that doctor’s dire prediction—she smiled. “We had this incredible pediatrician,” Pauline said. “She totally got that she should treat her as a child, not as a disability, not as a diagnosis.” They had help from early intervention specialists. Pauline was even teaching her to sign.
But it was an extraordinarily difficult life. “She never slept more than a half-hour at a time,” Pauline recalled. “It was way harder than anyone could imagine, to have a child with a disability and try to keep them home with the family.”
Sophia died April 10, 2005, at 19 months old. “She was incredible,” said Pauline. “I called her ‘Digati Woman.’ We have a kind of feistiness about us, and she definitely had that.”
Devastated, Pauline “started playing matchmaker” between parents with a special needs child, and volunteers. “[Parents say] ‘I haven’t slept in a year, my husband and I are going to get divorced, I don’t even know my other kids anymore because I can’t get to their sporting events’,” Pauline said. “They’re like the silent suffering people. Nobody knows them, because they can’t go anywhere.”
It became quickly clear that the need was greater than Pauline could provide in her volunteer ministry, and so the idea for Sophie’s Club was born, she said. “It will be a kid spa, much more than just custodial care for these children…art therapy, a garden they can participate in, the kinds of experiences typical kids have, sleepovers, socializing, parties. It’s going to be an amazing, wonderful place.”
She and her Sophie’s Club partner, Dr. Mary Schuetz, work out of East Aurora office space donated by Seedling Environmental. They recently attained nonprofit 501c3 status, are eligible for grants, and need donors. “If there is a building someone wants to donate and we can rehab, or get land in this area and build on it, we’re open,” said Pauline.
On Nov. 6, Pauline and the Perils will reunite to play at a benefit party for Sophie’s Club at Sportsmen’s Tavern in Buffalo. For more information on this event and on Sophie’s Club, visit www.sophiesclub.org.
