The seizures come on without warning, day or night, even while sleeping. And when they do, 10-year-old Nina Leone stops breathing.
Brooks School fifth-former Juliana Cervizzi wanted to do something, anything, to help as soon as she learned about the Natick, Mass., child — diagnosed with Autism Spectrum Disorder and the exceedingly rare Pitt-Hopkins Syndrome — from her mother.
Cervizzi appeared in a segment about Nina on WCVB May 3.
Leone has limited vocal speech and her family has been hoping to get her a seizure-alert dog to try to disrupt the cycle of her life-threatening cluster seizures, as well as notice and alert others when she starts to suffer one so that they can get the child her medication. The only trouble is, such a dog is costly ($40,000 at minimum, between buying/training one, caring for it and constructing a fence to keep the canine safe).
Cervizzi decided she could use her voice to help, literally, by writing a song to tell the world about Leone and creating a GoFundMe to raise money that the family could use to buy the dog.
"When my mom met Nina's mom, she'd told her how much Nina loves music," said Cervizzi, a member of Brooks' a cappella group, Serendipities, and an aspiring professional singer/songwriter, who played a leading role in Brooks' spring musical Hairspray (in photo below on left). "She said, 'Why doesn't Juliana write a song for Nina?'"
The idea was music to Cervizzi's ears. "The thought that I could do something that I love, and incorporate it to help someone else, it's the best thing," she said. "Making a difference in this way is amazing."
It all came together so naturally, said Cervizzi. "I've never had an easier time writing a song than that song. I just tried to put myself in the family's shoes somehow and the words just kind of came to me because I've had so many feelings about Nina. It was just there — all the things that I felt for her."
Leone's struggle with the chronic seizures "is really hard," Cervizzi added. "Her condition is so rare ... and this seizure-alert dog is crucial."
Yet when Cervizzi began fundraising in November, the money didn't come pouring in. "I kept thinking, I know that there are so many causes out there, but ... this girl is dying and no one is helping," she said. "So I tried to get the word out."
A segment with Cervizzi on radio host Billy Costa's show "Food for Thought" in December helped, as did a recent television interview with the Leones on WCVB.
"Now it's actually becoming a thing and is beneficial and making money," the student said of the fundraiser, which had raised $21,000 as of press time. "I'm just so proud to be a part of it!"
As for Cervizzi's musical career, well, that's getting impressive momentum now, too. "I have three songs out right now, and over March break, I spent two weeks in New York working with songwriters and producers," she said.
The artist (performing below in a clip from an all-school meeting this spring) built a home-recording studio in her house and enjoyed an "amazing experience" in a Berklee College of Music summer intensive program last year. "This summer, I'm releasing a professionally-produced album," she announced. Stay tuned!
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