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Narragansett girl’s rare diagnosis prompts mom to start nonprofit
by: Shannon Hegy
Posted: Aug 21, 2023 / 04:46 PM EDT
Updated: Aug 21, 2023 / 05:33 PM EDT
NARRAGANSETT, R.I. (WPRI) — On the surface, Bianca Carter looks just like any other 3-year-old girl.
“She is the happiest little girl,” her mother Nicole Carter said. “She is always smiling. People always gravitate to her. She’s silly.”
But there’s more to Bianca than meets the eye.
The Narragansett toddler has Hereditary Sensory and Autonomic Neuropathy type IV (HSAN IV), which is a rare genetic disorder that typically begins in infancy. Those who are diagnosed with HSAN IV can’t feel pain, sweat and distinguish hot from cold.
Her parents knew something was wrong when Bianca didn’t cry nor flinch at the doctors while receiving her scheduled immunizations.
“It sounds really cool at first, but when you actually stop to think about it, it is one of the most scary things a person could endure,” Nicole said. “Your sensory system and feeling pain is how you learn everything. It’s how you learn safety, like how to not touch a hot stove … Unfortunately, she can’t feel that.”
That’s why Nicole and her husband have to be hypervigilant with their daughter.
“When she was 2 years old, she was climbing up the back of one of our chairs and the back of the chair fell on top of her foot,” Nicole recalled. “She fractured her right foot, but she just got up and kept moving and playing with her big brother afterward.”
Nicole tells 12 News the diagnosis was made extremely more devastating when she learned the condition was rare. Bianca is one of only 300 children globally who have been diagnosed with HSAN IV.
There’s no cure nor treatment for the disorder. That reality led to Nicole to launch the HSAN IV Foundation last year.
The nonprofit organization has so far raised $100,000, all of which directly funds gene therapy research for HSAN IV at NYU Langone Health.
“I’m not stopping until there is gene therapy for those with HSAN IV,” Nicole said. “If it isn’t available for Bianca, or she chooses that she doesn’t want it, I want it available for the next set of parents who get this diagnosis.”
Nicole said the HSAN IV Foundation is hosting a fundraiser at Whaler’s Brewery on Sept. 16 from 4-7 p.m.