Brooklyn attorneys fight to help find therapeutic drug for son’s rare condition
The family is hosting a fundraiser at El Caribe on Nov. 22
When Camille Fortunato first heard the words Williams syndrome she had no idea what they meant, but she was quickly about to become an expert.
Her son Anthony, who just turned eight years old this month, was very sick when he was born, but doctors were unable to determine what the underlying issue was. Fortunato and her husband Stefano Filippazzo took Anthony to see cardiologists, pulmonologists and critical care physicians, but for two years and two months, nobody understood what was wrong with him.
Anthony cried all the time; he would come down with pneumonia; at times, he wouldn’t be breathing. It wasn’t until November 2013 that a doctor diagnosed Anthony with the very rare Williams syndrome.
“What Williams syndrome is, in a nutshell, you have a microdeletion along chromosome 7 which causes vascular disease. He’s missing the protein in his body that lets your vessels stay open, lets the blood go through, and lets the vessels be malleable. “These kids [with Williams syndrome] lack 26 – 28 genes on chromosome 7, which means their vessels are narrowed and that leads to pinching [compromised function] to the main organs,” Fortunato explained.
There is no cure for Williams syndrome, which only affects one in 10,000 people, and therapeutic surgeries are difficult because of the way people with the syndrome react to anesthesia.
“Because it’s vascular and cellular, it affects brain to toe,” Fortunato explained. “He has compromised intellect, vision, hearing, gastro, you name it, because the cell is missing a portion of his DNA.”
Fortunato said that when she first heard the diagnosis, she went into a deep depression. She said that she needed help from friends and family even to get out of bed at times. She said that she made it through that time only thanks to the help of her support system and by focusing on helping to ensure that her son sees the proper doctors and gets the best care that’s available to him.
“Getting the right doctors, getting the right therapist, in addition to being medically complicated, he does 55 hours a week between school and therapy,” Fortunato said. “He needs an occupational therapist, a physical therapist, an eating therapist. He’s needed everything because he couldn’t even open his hands. That’s how badly his body was closed up.”
Fortunato and Filippazzo leave their house in Mill Basin every day by 6:45 a.m. to drive Anthony to his school on the Upper West Side of Manhattan, a nearly 30-mile drive that takes over an hour when there is no traffic. It’s the closest school that can offer him the typical classroom situation for a child of his age while also providing him with the medical assistance he needs.
Fortunato also explained that it was important for her and her husband to keep their jobs because it offers them some form of normalcy, even if it does complicate trips to school and to doctor’s offices.
“Our life has taken such a turn over the last couple of years that I’ve found that I have to hold to something I love,” she said of her job at Fortunato & Fortunato, a firm on Court Street in Brooklyn. “When this happened, it was like the carpet was pulled out from underneath us.”
A lot of Fortunato’s focus is on finding some form of therapeutic drug for her son. To do this, she turned to an organization called the Williams Syndrome Association. The family started participating in its fundraisers in April 2014 and has done so every year since.
In 2017, Fortunato helped to organize a gala called White Night at Cipriani in Manhattan at which she and others raised over $1 million. All of that money went to fund a comprehensive cardiac anesthesia study at Morgan Stanley Children’s Hospital at Columbia University and Boston Children’s Hospital.
“We’ve already seen certain life-saving measures come out of that — certain types of anesthesia to use, and other things,” Fortunato said.
Since that event, the Williams Syndrome Association helped Fortunato and her family create the Anthony Filippazzo Grant for Williams syndrome Research. That was done to ensure that all money donated goes toward funding research.
The family is hosting a fundraiser for that purpose at El Caribe in Brooklyn on Friday, Nov. 22. More information can be found online at https://e.givesmart.com/events/dIp/.
“Nobody knows, and we don’t have a crystal ball,” Fortunato said when asked about Anthony’s life expectancy. “I can’t suffocate myself with any of the statistics. I just know that I can help to make sure that he’s getting the best medical care and the longest and healthiest life possible, and that’s what I’m doing.”
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