A Three Village family is helping to raise awareness about a rare disorder.
Hope for Histiocytosis is hosting a fundraiser April 7 in Port Jefferson. The foundation was inspired by the frustrations felt by Setauket residents Alexandra and Christopher Calderone after the couple struggled to find a diagnosis for their daughter Amelia a few years ago. Doctors eventually diagnosed Amelia with Langerhans cell histiocytosis, a disorder where the body produces too many of a type of white blood cell that helps the body fight off infection.
Now 8 years old and in third grade in Setauket Elementary School, Amelia was only 5 years old and in kindergarten, her mother said, when she started to complain that her back was sore in the morning. At first the Calderone family thought it was due to a new mattress being too firm for her or from wearing a backpack to school. Periodic fevers soon followed, and she would come home from school feeling nauseous. She would also complain of seeing black spots in her vision and said she had a wood taste in her mouth. As the school year progressed, her teacher told her mother that Amelia was having trouble reciting what she learned that day.
While the parents brought her to a group practice of pediatricians continuously, doctors couldn’t come up with a diagnosis, and while Lyme disease was first suspected, it was initially ruled out. It wasn’t until the parents asked to see the head doctor of the practice who reviewed her tests that Lyme disease was considered as a possibility.
The diagnosis led to Amelia, who at the time was 6, to visit a rheumatologist where doctors found a mass on her spine.
“The red flag was up, ‘OK, there’s something wrong here,’” Alexandra Calderone said.
The parents then brought her to Cohen’s Children Medical Center where Dr. Carolyn Fein Levy treated Amelia and the LCH diagnosis was finally given. While the journey to an answer was a difficult one, Calderone said her daughter was a trooper during everything, and her last chemo treatment was in September 2018.
“She’s really so mature, and handled the doctors, the scans, the blood work, the pain,” she said.
Last year friend and neighbor Jennifer Scarlatos, co-owner of Toast Coffeehouse in Port Jefferson, decided she wanted to do something to help Amelia who is friends with her son Everett. She said she wasn’t sure what she was going to do but wanted to do something.
“She’s spirited,” Scarlatos said. “She’s just so sweet, and I don’t know, you just love her from the beginning.”
Scarlatos organized a fundraiser at Theatre Three where attendees enjoyed a children’s musical and afterward gathered in the downstairs area for a party that included raffles and balloon animal making for the children.
She told Calderone to use the money for what she thought was best. These funds helped the mother establish Hope for Histiocytosis. Scarlatos said she is happy she was able to help kick start the foundation after last year’s fundraiser.
“I would love to help with anything else they’re going to do in the future too because they’re a wonderful family,” she said.
Calderone hopes her foundation and the fundraiser will bring awareness to the disease, which she said many pediatricians are unaware of. She said when trying to find what’s wrong with a child, parents need to have faith in their gut feelings.
“You know your kid, and you know when things are wrong,” she said. “You can’t cower down to someone saying, ‘You’re exaggerating.’”
She said when it comes to starting a foundation or raising awareness, it has to feel right.
“I feel like this is the right next step,” Calderone said. “Now it can be sort of a healing for us to talk about it and to have the awareness.”
The mother said proceeds from the event will go toward the Pediatric Oncology Rare Tumor and Sarcoma program at Cohen’s Children Medical Center, which is led by Fein Levy.
The April 7 fundraiser will be a Sunday brunch from 10 a.m. to 2 p.m. at The Waterview at Port Jefferson Country Club located at 44 Fairway Drive. Admission is $65 for adults and $40 for children 5 through 12 years old. The event includes a Sunday brunch with Bloody Marys and mimosas. There will also be raffle prizes, face painting and entertainment by the Sugaree Band.
For more information about the foundation, visit www.hopeforhistiocytosis.org.