When their daughter, Mia Bella, was born, Francesca Buffo and Noah Zingarelli, formerly of Springs, were told she would live a month, maybe a year at most, but Mia defied the odds at many turns, and in February will celebrate her sixth birthday — a miracle her parents prayed for, but could never count on.
Mia was born with pyruvate dehydrogenase deficiency, commonly called P.D.H. deficiency, a mitochondrial disease. She has severe epilepsy, respiratory disease, very limited sight and hearing, and low muscle tone that prohibits her from eating orally or walking or sitting on her own. “She’s completely dependent on us,” Ms. Buffo said over the telephone last week.
Ms. Buffo and Mr. Zingarelli have made it through the past six-plus years with the support of family, extraordinary doctors and nurses, teachers, friends, and an extended community both on the South Fork, where they grew up, and in the Boston area, where they live now. Often, they’ve depended on the generosity of friends and even strangers to provide their daughter with the many things that health insurance does not cover.
Now, the family is looking for assistance to buy an adapted minivan equipped with a wheelchair lock so they can transport Mia to school, doctors’ appointments, and around town. A cocktail party on Saturday from 6 to 9 p.m. at the community center of Queen of the Most Holy Rosary Catholic Church in Bridgehampton will raise money for the van, which can cost up to $40,000, used.
Beyond the emotional challenges of having a child with a life-threatening illness and around-the-clock medical needs, the financial strain is enormous. Mia’s medical bills had reached nearly $1 million, when “we worked with a social worker and it was forgiven,” Ms. Buffo said last week. After using her credit cards to pay for necessary equipment that medical insurance would not cover, Ms. Buffo, an interior designer who has been unable to work since her pregnancy, eventually couldn’t make the minimum monthly payments and had to declare bankruptcy. “So many families with kids like Mia are going through similar circumstances. You’ve just got to put one foot in front of the other.”
“It’s very difficult to ask for help,” Ms. Buffo said, but on both the emotional and financial fronts, “it’s amazing the support we have gotten. . . . The love that’s in this community has been amazing.”
“Knowing you’re not alone is a huge thing for us, and for Mia,” she said.
Mr. Zingarelli and Ms. Buffo’s parents still live here. Martha Buffo, her mother, and his mom, Donna Zingarelli, who works for Queen of the Most Holy Rosary, are organizing Saturday’s fund-raiser.
The couple were living in Los Angeles when Ms. Buffo became pregnant. She found out in her 19th week that the baby would have serious medical issues, but doctors could not say exactly what they would be. They moved back to the East Coast to be near family. When Mia was born at Stony Brook University Medical Center, “the neonatologists were at our side,” Ms. Buffo said. “There have been issues from the moment she came out until today.” Mia has microcephaly, “which means that the brain is formed really small,” her mother explained.
The doctors at Stony Brook did not have the facilities to handle Mia’s situation, but through extensive research, the couple learned about Boston Children’s Hospital, Harvard’s pediatric teaching facility. After two months at Stony Brook, Mia was transferred to Boston on April 1, 2007. She remained in the intensive care unit there for three weeks, and lived in the hospital until that June. “We decorated her side of the room like a baby’s room,” Ms. Buffo said. Life in the hospital was “Mia’s reality,” and that of her parents, too.
“I was very lost,” Ms. Buffo recalled. “We had no idea what to do.” But through more research, constant visits with doctors, and connecting with other parents in similar situations, they have found their way forward.
“I’d never been so involved in the medical world,” Ms. Buffo said. Now, “When a child’s born with a ‘mito’ disease, I’m a family advocate. It’s very rewarding and very therapeutic for me.”
When Ms. Buffo learned that she is a carrier for Mia’s disease, the couple decided not to have other children. “It’s heartbreaking, but it’s also so beautiful that I get to spend quality time with Mia.”
Mia is enrolled in a special-needs teaching school on the Boston College campus, which has a nursing staff. She also has around-the-clock home nursing care because many of her needs are too great for her parents to handle without professional backup. “When she gets sick, she gets really sick,” and even an illness that might be minor for other children can be life-threatening for her. “We never know when she’s going to pass,” Ms. Buffo said. “She probably won’t live to be a teenager.”
Developmentally, Ms. Buffo said, Mia is about 6 months old, and communicates with some of the same simple sounds of a baby at that age. Her parents know when she is excited or happy, when she is content, or when something new intrigues her. She can see peripherally, and has a keen sense of smell. “She smells me. She knows as soon as I pull up at school.” But “simple things like eating something delicious,” Mia will never experience.
“Sometimes you feel like you’re drowning,” Ms. Buffo said, but she and her husband “stopped asking, ‘Why did this happen to us?’ ” They look instead to the gifts Mia has given them. “She’s taught us so much beyond what I would have ever expected. . . . She’s just all love. She’s brilliant. Mia’s my teacher. She’s guiding us through this.”
“Making decisions as a parent has been very rough,” Ms. Buffo said. “I find peace in the fact that I know we’re doing the right thing for us.”
Entry to the fund-raiser on Saturday will be by donation of any amount. There will also be a raffle. Those who cannot make the party but would like to make a donation toward the minivan may do so by mailing a check to Miracle for Mia, P.O. Box 1463, Bridgehampton 11932. Donations can also be made by PayPal on Mr. Zingarelli’s blog about his daughter, zingoswest.blogspot.com.
The family plans to attend the fund-raiser on Saturday if Mia is in good health.