Benefit to aid infant with rare disease
WALLINGFORD — Jonathan Narducci was born a happy and healthy baby, but after seven months all that changed in an instant.
Last May, Paul Narducci picked up his son from day care and found Jonathan’s body limp with labored breathing. Since then, Paul and Bonnie Narducci have spent every day by their son’s side praying for his recovery and taking things one day at a time.
Tonight, The Wishing Well is holding a ziti dinner fund-raiser to help the family raise money to cover the costs of long-term care for Jonathan’s acute transverse myelitis.
Jonathan, 19 months old, was diagnosed last May with the neurological syndrome caused by the inflammation of the spinal cord. Since his diagnosis, Jonathan has not been able to cry audibly or speak, has a feeding tube to aid in nutrition and is paralyzed from the neck down.
“We realize the reality of it,” Paul Narducci said, adding that doctors have pretty much said Jonathan will be in a wheelchair for the rest of his life. “But we also have faith, we hope he’ll be that miracle kid.”
When Jonathan was rushed to Yale-New Haven Hospital last year, doctors could not determine what was wrong with him right away, Paul Narducci said, and the infant was initially quarantined. Even when the diagnosis was determined, Transverse Myelitis is so rare and Jonathan is so young that it was hard to cope. Jonathan was put on a respirator, which was keeping him alive, his father said.
According to the Transverse Myelitis Association, onset of the disorder is sudden and may be caused by viral infections, spinal cord injuries, immune reactions, or insufficient blood flow through the blood vessels in the spinal cord. There is no specific treatment for the syndrome and the prognosis for complete recovery is generally not good, the association states on their Web site, www.myelitis.org
Jonathan stayed at Yale-New Haven Hospital from May through July, then moved to the Hospital for Special Care in New Britain. At both hospitals, Paul and Bonnie Narducci stayed by their son’s side, alternating when they would spend the night and making sure Jonathan was never alone. Paul’s mother Marje Narducci and Bonnie’s grandmother, Eleanor Borek, also spent time with Jonathan every day, to relieve Paul and Bonnie and allow them to work when they could.
Doctors have been treating Jonathan as they would a spinal injury patient, because they are not entirely familiar with transverse myelitis, Paul said. Instead, Paul and Bonnie have been in contact with doctors at Johns Hopkins University in Maryland, who are researching the illness and ways to treat it.
On April 21, Jonathan was finally able to go home with his parents, who had learned everything they could in order to take care of their son. Bonnie took a nine-week leave from her job at Aetna to be at home as much as she could.
“It’s harder to be home because there are no nurses or doctors to fall back on,” Bonnie said. “But it’s better because we’re all here.”
Jonathan’s room was reorganized to fit his Ventilator and an extra bed, so that Bonnie or Paul can sleep with him every night. Another ventilator is in the living room, where Jonathan also has a special chair where he can sit with his head supported and his feeding tube intact. A monitor sits on the floor, hooked up to a video camera watching Jonathan’s bed in his room.
“No father, no mother should ever have to go through this,” Paul said.
The Narducci’s remain as positive as they can be, however, and Bonnie said they’re hopeful Jonathan will be able to go off the ventilator and feeding tube this year. Since Jonathan is so young and is still developing, the next year is crucial, Paul said.
Huge expenses are in the future for Jonathan’s care, which include remodeling the house with a handicapped bathroom and shower, as well as an area for therapy and a ramp leading to the house. Medical and home health care costs will be adding up as Paul and Bonnie’s insurance runs out.
In addition to the Wishing Well’s dinner today, the Narducci’s say the community has been “overwhelming” in their generosity. Scrubbin’ Bubbles on North Colony Road donated 50 percent of every car serviced last weekend to Jonathan’s cause. Precious Cargo, Jonathan’s daycare center, has also started Jonny’s Jar to collect money for the infant.
Michael Pyskaty of the Wishing Well said he hopes 600-800 people come to tonight’s dinner. Pyskaty and Judy Daus of the organization met with the family to decide how to best go about meeting their needs.
“We’re trying to raise money fast to get them on their feet,” Pyskaty said. “The quickest way to do that is a ziti dinner.”