The Zingarelli-Buffo family has become accustomed to living moment to moment raising their daughter who has a progressive brain disease. In fact, doctors expected Mia Bella to live 3 months and no more than 18 months. She's defied the odds — a medical miracle, her family says. She's now 2 months shy of her 6th birthday.
While Mia's parents try not to think about what the next day might bring, they find themselves in need of bigger accommodations for their growing daughter. A fundraiser in Mia's honor on Saturday night in Bridgehampton is to help raise money for a wheelchair-accessible van.
Born with a mitochondrial disease known as PDH deficiency, Mia has little muscle tone from her neck to her belly button and can't hold her head up in a car seat, according to her mother Francesca Buffo, who owns a house in Springs where her husband Noah Zingarelli was raised. Mia's wheelchair doesn't fit the family's current vehicle.
"It will give us ease and calmness knowing we are transporting Mia safely and comfortably," Buffo said of the van. She found a place that sells used vans already adapted for wheelchairs.
The price tag is $40,000. While the cost is less than the $90,000 it would be buy a new van and make it wheelchair-accessible, the price is far outside the family's reach. They are struggling to make ends meet in Boston, where they relocated so that Mia could be under the care of a metabolic specialist who diagnosed her after she was born at Stony Brook University Medical Center.
"I knew she was sick in utero," Buffo said, explaining that fluid was seen on Mia's brain, though a diagnosis was not possible. Mia was born at 36 1/2 weeks and stopped breathing. Mia had "major brain damage," her mother said. She was born deaf and blind.
"She loves to smile. It's really beautiful to see," Buffo said, adding that her daughter has developed some sight and hearing. "We never thought Mia would do anything. To see her so alert, so with us, so alive, it's beautiful. She's my miracle baby," Buffo said.
Mia suffers from a respiratory disease and neuropathy, experiences up to 50 seizures per day, and has gastrointestinal issues. She is fed through a gastric tube and has round-the-clock nursing care. An oxygen machine monitors her breathing at night.
They are prepared for almost anything, Buffo said. Their apartment is like "a mini hospital," filling with machines that allow the family to spend more time at home, and less time darting off to the emergency room.
In spite of it all, she's one of the oldest living children with this mitochondrial disease, her mother said.
She attends a program at Boston College for severely handicapped children, where she receives physical and occupational therapy. She's gone apple picking and done ballet. She's even experienced what it's like to walk thanks to her therapists and a gated walker. Though she used to not be able to lift her arms up, she can now touch her face. "It brings tears to your eyes," her mother said.
"She's growing beautifully. Every year is such a milestone for her," said Mia's grandmother Donna Zingarelli, who lives in Springs and was the founder of Michael's at Maidstone Beach with her former husband Michael Zingarelli, who lives in Southampton, in 1976.
Donna, along with Buffo's mother Martha Buffo, who lives in Bridgehampton, organized the fundraiser at Queen of the Most Holy Rosary Church in Bridgehampton, where she works as the parish secretary.
They've gathered raffle items ranging from a $200 gift certificate to the American Hotel to a gift basket from Whole Foods, where Mia's father works in Boston. There will be a separate raffle of an autographed baseball jersey from Carl Yastrzemski, a Bridgehampton native. The drawing will be held in February.
The fundraiser will include hors d'oeuvres and music. In lieu of admission, they are asking for donations.
Mia and her parents will travel to Bridgehampton for the fundraiser. "We are so grateful," Buffo said. "We live, literally, second to second. Tomorrow is a gift."
The cocktail party fundraiser for Mia Bella Zingarelli will be held on Saturday at Queen of the Most Holy Rosary Church, 2350 Montauk Hwy., Bridgehampton, from 6 to 9 p.m. If you are unable to attend, donations may be mailed. Please send a check made out to Miracle for Mia, P.O. Box 1463, Bridgehampton, NY 11932. To buy tickets for the autographed baseball jersey raffle, call 631-324-7581.
You can read more about Mia on her parents' blog by clicking here.