Rare Diseases

Woman on desperate search to find doctor who will operate on son with rare disease

A New York mother has turned to her son’s legion of Facebook supporters in hopes of finding a doctor who will operate on him as the 20-year-old battles a disease so rare that it isn’t named. Nicholas “Nico” Vigliotti, 20, wasn’t supposed to make it past his first day on earth, NBC New York reported.

“They said, ‘You need to see your son, he only has minutes to live,’” Debbie Vigliotti, Nico’s mother, told NBC New York.

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He was eventually diagnosed with chromosome 14 deletion, which affects his brain, lungs and thyroid, the news outlet reported. Now, 17 surgeries later, Nico has been on a ventilator for two years and will need to come of it for a lung transplant if he wants to survive, Debbie told NBC New York.

“Every single doctor has said this child is a miracle child,” Debbie said.

But, due to his fragile health, Debbie said Nico has been denied by three transplant centers and she hasn’t been able to find a doctor willing to operate on her son. After a health scare earlier this month, she decided to take her plea to social media in an effort to expand their search.

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“I’m praying to God that I can get this message out to millions of people,” she said in a May 20 video posted to Facebook. “Because out of those millions there has to be one. One — that’s all I need is one person, one doctor, one scientist, one research doctor, I don’t know — but reach someone who would be willing to take a chance on Nico, our warrior, who has been here 20 years, almost 21 years, and he’s not ready to go. He still has a full life.”

In a follow-up post she said that many supporters have reached out and connected her with doctors across the country.

“I’ve had many surgeries over the years and hospital visits; it’s just very hard,” Nico told NBC New York.