From left: Debbie Vigliotti and her son, Nicholas.

Debbie Vigliotti was optimistic despite her son being diagnosed with an extremely rare disorder, thinking the news meant doctors could treat him, but instead there were more hospital visits and unanswered questions.

Two decades after his diagnoses at 18 months old, Nicholas “Nico” Vigliotti, now 20, of Glen Cove, is still fighting for his life despite having what’s known as Chromosome 14 Deletion, a rare disorder that leaves doctors in awe that he is still alive. Things took a turn for the worse in 2015, when his medical bills became extremely unaffordable, forcing his mother to seek donations. So Nico fulfilled his dream to co-write a song to help raise funds to pay the bills and the family turned to social media in a last-ditch effort for lung transplant donors—all while launching a nonprofit to help other families in similar situations.

“He is living proof of miracles every day,” said Debbie.

Her son’s condition, which affects the brain, lungs and thyroid, is so rare that is doesn’t even have a medical name. Nico was the second person in the world to be diagnosed with it after a doctor found in a medical journal that one other person in the world, a girl from Belgium, had the same disorder.

“He’s now beyond the point where medicine can help his lungs,” Wendy Chung, a medical geneticist who has treated Nico for years, told Newsday. “He needs someone else’s lungs to breathe for him.”

In recent months, Nico’s condition has worsened. Debbie posted a video on Facebook last month asking for people to help find a doctor willing to perform a double lung transplant—a crucial, yet risky surgery that is his only chances of surviving. The Vigliottis have been denied by three medical centers in New York and now are trying everything they can to just get one doctor to consider proceeding with the transplant.

“I’m praying to God that I can get this message out to millions of people,” Debbie said in her Facebook video. “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.”

Nico and his family have received an overwhelming amount of help and support through the video. They have been set up with Dr. Gabriel Loor of Baylor St. Luke’s Medical Center in Houston. But Nico still has to undergo several tests in order to be approved to head to Texas and be evaluated by doctors there and a lung donor has not yet been found.

The video wasn’t the first time Debbie headed online in order to find help and hope. In 2015, after Nico became very sick and needed extra nursing care, Debbie created a Go Fund Me Page to help cover the costs that added up to $300 per day. Debbie is a divorced mother who is unable to work, as she has to devote a lot of time to taking care of Nico. So far, the Go Fund Me page has collected a total of $19,034.

After all the support Nico and his family received, Debbie wanted to find a way to give back, so she founded Paving Pathways for Tomorrow, a nonprofit foundation that focuses on helping single parents who are raising children with a rare disease. So far, Paving Pathways for Tomorrow has helped Joshua, who is diagnosed with a rare genetic disorder, DiGeorge Syndrome, receive a laptop so he could be home schooled. It’s also helping find a sponsor for Julia, an 8 year old with Escobar Syndrome, who is in need of an electric wheelchair for her size.

Backed by a “dream team” of directors Maria Ditizio and Claudia Marra, as well as Jason Martello, Michelle Schneider and Perri Silverstein, Paving Pathways for Tomorrow has also helped spread the word about Nico’s story and given him hope in the process.

“We should be recognized,” said Debbie. “Children with rare diseases shouldn’t be scratching their way through life. They should get help.”

Last year, when Nico became very sick, Debbie reached out via social media to help Nico achieve one of his goals in life: to inspire others through music. Nico has always had a passion for music, and when doctor’s thought it was the end of the road for him, he told his mother, “I want the world to hear my fight,” Debbie recalled. So she contacted Peter Shaw, who previously performed with the Trans-Siberian Orchestra and has been following Nico’s story.

Together, Nico and Shaw wrote and performed “I Can Wait For Heaven.” According to Debbie, the song is Nico’s inspiration to keep fighting. It can be purchased on iTunes and Amazon for 99 cents, and all of the proceeds that come from this song go to his foundation.

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

The months to come will be full of waiting, wondering and hoping for the family. They are still unsure of whether Nico will be cleared for the lung transplant, but his family is staying strong and positive. Debbie continues to give updates on Nico’s journey online and Nico’s father has become more involved recently.

Nico’s younger brother, Dante, has also devoted much of his life to Nico. Dante is attending Stony Brook University to study environmental sciences, and is on the path to study Biomedical Engineering and Research and Development. His goal is creating equipment that can help children who are sick.

“Every purpose in his life gives him another day of hope,” Debbie said of Nico.

The link for “I Can Wait For Heaven” can be found here. More information on Nico’s story, Paving Pathways for Tomorrow and how to help a family like Nico’s can be found at pavingpathwaysfortomorrow.org. The Go Fund Me page for Nico is still active, and can be found atgofundme.com/PrayForNico.

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