MILL BASIN — Camille Fortunato admits that when her son Anthony Filippazzo was diagnosed at the age of 2 with Williams syndrome, a rare disorder that severely affects heart function and motor skills, she didn’t take the news well.
“I was angry,” she recalled. “I thought, ‘Why is God doing this to my child?’ ”
But a conversation with Msgr. Jamie Gigantiello, who at the time was the pastor of her parish, St. Bernard of Clairvaux in Mill Basin, made her view things differently. “Msgr. Jamie told me that we all have crosses to bear in life. But it’s how you choose to bear it that matters,” she said. He also gave her a medal with the inscription, “Do Not Be Afraid, I Am Always With You.”
Both Fortunato and Anthony are doing much better these days. Anthony is now 11, and his mother has become a fundraiser for research into Williams syndrome.
On Monday, April 17, she organized a wine-tasting fundraiser at Valbella At The Park, a restaurant near Bryant Park in Midtown Manhattan, that was attended by 600 people and raised $400,000. “It was an incredible night,” said Fortunato, a lawyer. “When you are raising funds for a rare disease no one knows about, it’s hard to get people to come. But they did come.”
Williams syndrome is a developmental disorder caused by a gene mutation that affects one in 10,000 babies born in the U.S. The condition often causes cardiovascular issues, impedes motor skills, and leads to gastrointestinal problems and kidney ailments. The disorder can also cause intellectual disabilities and learning problems.
There are approximately 30,000 people in the U.S. currently living with Williams syndrome.
Fortunato and her husband Stefano knew something was wrong with Anthony even before they received the devastating diagnosis. “He could not speak, could not walk, could not sit up,” she recalled. It took two years before they found out that Anthony had Williams syndrome.
“It was a scary diagnosis. There were so many unknowns in the beginning. I had no answers. All I knew was that it was a permanent, lifelong condition,” Fortunato recalled.
After a period of what she calls “grieving,” and after her talk with Msgr. Gigantiello, Fortunato decided to take action. She researched the disorder and then began doing volunteer work for the Williams Syndrome Association.
“We knew at age 3 that Anthony needed cardiac surgery. The real driving force for my advocacy was my son needing heart surgery,” she said.
Fortunato formed the Anthony Filippazzo Grant for Williams Syndrome Research in 2018 and organized her first fundraiser the following year, raising $300,000.
She is clear-eyed and realistic about her goals for the grant. “My goal is not to cure Williams syndrome. I want treatments, I want testing, and I want medications developed,” she said. The next fundraiser is scheduled to take place on Friday, Nov. 2, at El Caribe Country Club in Mill Basin.
Fortunato is grateful for the progress Anthony has made. She is also grateful for the love and support she and her family have received from St. Bernard of Clairvaux Parish.
The Faith Formation Office helped prepare him for first holy Communion. Anthony, who is on the autism spectrum, also has difficulty eating and had to practice receiving Communion. But he made it through with flying colors, his proud mother said.
“The faith formation program is incredible. Just getting him to Communion was a victory,” Fortunato said. “My son is doing amazing, thank God. But it has been a long 11 years, and I want to do what I can for other parents going through this.”
HOW YOU CAN HELP
For more information on the Anthony Filippazzo Grant for Williams Syndrome Research, visit wsresearch.org.