STATEN ISLAND, N.Y. — It’s been two years since we gave you an update on Frank and Gianna Vesce’s heart-wrenching family struggle.
Frankie Jr., 13, and Lia, 7, suffer from an undiagnosed medical disorder that result in daily seizures and feed only through tubes.
Cortically blind and unable to walk, they’ve spent more time in the hospital hooked up to a feeding tube in their short lives than the average person would spend in four lifetimes.
Frank and Gianna, longtime Huguenot residents who now call Freehold, N.J., home, have traveled around the nation in hopes of finding a cure for this rare disorder affecting their children. (A third child, 9-year-old Adrianna, does not suffer from the illness.)
THE ‘SUPERVAN’ CAMPAIGN
Regina Sorrentino-Corbett, a close family friend, came forward to spearhead an online effort to raise funds for the Vesces, who were in dire need of an oversized “supervan” to safely transport the children to and from hospitals and doctors’ offices, many of which are located in other states.
Within time, Regina raised $56,000 for a customized van — and teamed up with Tracy Cangianno of Cangiano Real Estate and Charlie Balducci of NYC Arts Cypher Against Bullying to raise the balance.
The trio brainstormed the idea of hosting a benefit dubbed, “A Journey of Angels,” and big wigs at Toyota stepped in with the remaining $20,000 to purchase a Merecedes Sprinter designed by High Quality Custom Design in South Hackensack and Ray Catena of Edison.
“We are so blessed to be able to travel together as a family with our nurses, to attend functions, doctor’s appointments, during holidays, and outings,” said Frank. “With the full service van we have had the opportunities to give breathing treatments, charge suction and feeding pumps, and most importantly discreetly and comfortably change the children with the dignity and the discretion they deserve.”
A VESCE FAMILY UPDATE
This year has been an especially rough one for the Vesces, as they are still battling Lia’s uncontrolled seizures after several hospitalizations. At one point, she was having approximately 40 seizures an hour.
Despite several medication changes, Lia has remained unresponsive. She suffered horribly from side effects and was put on high doses of steroids which didn’t work.
After all meds were exhausted, Lia was put on the ketogenic diet in an attempt to suppress her seizures.
“We have seen a slight improvement in her seizure control but she still suffers from constant hyperactivity,” Frank said. “She was started on a medication to help the hyperactivity but it didn’t work. Some nights she barely sleeps, she just can’t stop the movements. We are still working to give her the best quality of life she deserves.”
Frank said, “by the grace of God,” Frankie has has had no hospitalizations this year.
“It’s a record for him — but he has needed his emergency seizure rescue meds for seizures lasting longer than two minutes, a few times a month,” Frank Sr. said. “He responded well each time and we did not have to call 911. We are in the process of trying to adjust his meds so that he isn’t so sleepy all the time but Frankie is very sensitive to any meds changes.”
As a family, this year the Vesce’s were able to attend ECHO’s luncheon at the Hilton, and Joey’s Little Angel’s Toy Drive, an organization that collects toys to distribute to children in local area hospitals, to Popcorn Park Zoo and Turtleback Zoo, and even got to keep many out of state doctor’s appointments.
The Vesces said they now “such peace of mind” knowing that they have a safe, reliable mode of transportation that can accommodate their family and nurses.
Frank said they look forward to many more family outings when the children are more stable.
“We are very blessed to be able to have these opportunities and can’t wait to make more beautiful memories.”