By Brendan Browne
An 8-year-old girl from Forest Hills breathed a sigh of relief recently after the governor signed into law a bill that classifies a rare genetic disease she suffers from as a developmental disability, effectively entitling her to certain medical benefits from the state.
Thanks to the bill, Gabrielle Jassie, who goes by the name Gabi, and others living with familial dysautonomia, or FD, have become eligible for Medicaid insurance. That will help pay for visits to the doctor, prescription drugs, medial equipment, nursing services, and speech, occupational, and physical therapy, and more.
“I’m in shock. It’s fabulous,” said Gabi’s mother, Cari Pepkin, referring to the new legislation. “The passage of the bill will make it easier to get those benefits that we are entitled to from the state.”
Pepkin and Gabi’s father, Roger Jassie, said they struggled for years to get their daughter proper medical attention to treat her illness, which only afflicts Ashkenazi Jews. Not only did their insurance fail to cover all the services she needed, but many doctors had never heard of the disease either, they said.
State Sen. Daniel Hevesi (D-Forest Hills), who pushed for the bill in the Senate, dubbed the legislation “Gabi’s Law” since the girl and her family asked him to ensure that the bill passed.
FD, also known as Riley Day Syndrome, kills about half of those who suffer from it before the age of 5 and almost all by 25, said Pepkin. According to statistics compiled by the Familial Dysautonomia Foundation, there are only be about 340 people who live with FD in the world and about a third of those live in the New York area.
The disease causes a dysfunction of the nervous system and an inability to feel pain, control body temperature and blood pressure, and produce tears, according to the foundation. It also causes poor muscle tone, respiratory congestion due to misdirected swallowing, and skin blotching.
State Assemblyman Jeffrey Dinowitz (D-Bronx) authored the bill after a few of his constituents with children afflicted by the disease appealed to him for help, he said. When the Assembly members passed the bill, Hevesi successfully helped lobby his colleagues to also approve the legislation in the Senate.
“It’s really a terrible disease. The idea was to make it a little easier to get certain services from the state,” Dinowitz said.
“This bill before us is one of the best things I have seen us do,” Hevesi told his Senate colleagues before the voted to pass the bill.
FD is now included on the state list of developmental disabilities, which includes mental retardation, cerebral palsy, epilepsy, neurological impairment, autism, and any other condition related to mental retardation or dyslexia.
The bill also raises awareness about FD, Pepkin said. Although Gabi visited doctor after doctor as a baby, she was not diagnosed with the illness until she was nearly 2 years old.
Before that doctors could not determine why Gabi kept coming down with pneumonia until a physician at North Shore Long Island Jewish Medical Center, who had come across FD while studying in Israel, recognized the disease’s symptoms in Gabi.
Doctors soon realized that Gabi could not properly control swallowing and was inhaling liquids into her lungs, which caused pneumonia, Pepkin said. Since then Gabi has taken all liquids through a tube that connects directly to her stomach and she can only eat solid foods.
The Board of Education arranged for Gabi to attend the Henry Viscardi School for children with physical disabilities in Albertson, L.I. and a nurse attends to her at her home.
Reach reporter Brendan Browne by e-mail at Timesledger@aol.com or by phone at 229-0300, Ext. 155.
