Riverdale couple raises funds for 3-year-old son with 'extraordinarily rare disease'
One Bronx mother has turned her love for the performing arts into an effort to cure her son's rare disease.
“I worked hard to get into Julliard. I really was proud of that,” says Jessica Klein-Foglio
Klein-Foglio never expected she'd have to step away from the one craft she worked so hard to perfect because of her son's health.
"I dropped everything because I started taking him to therapies 21 times a week," says Klein-Foglio.
Klein-Foglio, an opera singer, says her 3-year-old son Ben has trouble speaking and needs a walker.
She says she noticed something was amiss with him right away.
Klein-Foglio and her husband Mike took their son to the doctor only to find out they were dealing with something even specialists have trouble diagnosing.
"It's not a rare disease, it's an extraordinarily rare disease. I deal with rare diseases as a geneticist, I've never seen Salla before," says Chief of Pediatric Genetic Medicine Melissa Wasserstein at the Children's Hospital at Montefiore.
Salla is a genetic disorder so rare there's only a handful of known cases across the country, according to Wasserstein.
Instead of crumbling, the Bronx parents vowed not to give up.
"We decided we wanted to face it with grace, humility and courage," says Klein-Foglio.
The Foglios worked with Montefiore and the Albert Einstein College of Medicine to create the "IDD Gene Team," partnering parents with experts to learn more about the disease.
The Foglios also created the Salla Treatment and Research Foundation, or "Star for Ben."
"We made a match with Ben, so we now have scientists studying Salla disease, it's amazing," says Klein-Foglio.
The family's plan to raise funds for research on the rare disease is coming to fruition thanks to the community. Several businesses, including Skyview Wines, were touched enough by Ben's story to donate to a benefit concert for the 3-year-old.
"There's so many serious situations in the world right now, but this is one that touched our community deeply," says Gary Wartels, business owner.
Some of Jessica's friends from music school stepped up to raise more than $17,000 Wednesday night.
Although there's no cure yet, the Foglios are trying to help other families affected by Salla.
For now, they say they'll enjoy making memories.
"I'm not going to focus on what's going to happen down the road, I have an idea and I am prepared for that, but I am going to enjoy the good times we have with him," says Mike Foglio.