Student with Treacher Collins-related hearing loss to study music
My Chemical Romance. Pierce The Veil. Nirvana. These are just a few of Nerivette Santiago’s favorite bands — and she may well be on her way to discovering or working with the next generation of rock and punk sounds.
“What I love most about music is that it brings people together,” said Santiago, 19, an aspiring music producer. “When you go to a concert, there are all kinds of people there, coming to listen to the same band. It doesn’t matter who they are or what they look like.”
Santiago’s words perhaps resonate most because she is a graduating senior at the Henry Viscardi School, a state-funded regional special-education school for students with severe physical disabilities and medical impairments. She has been a student there since kindergarten.
Santiago was born with Treacher Collins syndrome, a rare genetic disorder that the National Institutes of Health estimates affects about 1 in 50,000 people, and she has a list of medical challenges, including hearing loss.
She wears two hearing aids and a tracheotomy tube in an opening in her neck in case she needs to be put on a ventilator. She cannot breathe through her nose and has had difficulty swallowing and eating. She lived with a feeding tube for nutrients until she was age 12 and is smaller than average, standing 4 feet 11 inches tall and weighing 70 pounds.
Santiago has endured at least 10 major surgeries to correct deformities in her skull, jaw and face that are symptoms of the disorder.
None of these challenges has stopped her from being on Viscardi’s wheelchair basketball team or from realizing her dream of going to college. She will attend Mercy College in Dobbs Ferry to study music industry and technology. She said she especially looks forward to living in campus housing, not far from her family’s home in the Bronx. Santiago travels with a nurse, but college is a chance for her to be the most independent she’s ever been.
“December 22, 2016 — the day I was accepted to college — was the proudest and happiest day of my life,” said Santiago.
Monica Snyder, guidance counselor at Viscardi, said Santiago was extremely excited to look at colleges and applied on her own.
“I don’t worry about her,” Snyder said. “I know when she leaves here she will be just fine. She is a good advocate for herself and really did her due diligence, asked great questions, when she was looking at colleges. Through all of her challenges, Neri has persevered through it all.”
IF I RULED THE WORLD: “I would like people to change the way they view others and not stereotype them. Get to know people, don’t make assumptions.”
Candice Ferrette covers Nassau County government and politics on Long Island. She has been a reporter at Newsday since 2011.
