Glen Cove resident Debbie Vigliotti took to social media to tell the world about her son, Nico in 2017. She wanted everyone to know about his struggle with a rare illness and his willingness to fight for his life every single day. She was also seeking out any doctors willing to take on Nico’s case, hoping that somebody could help him live a normal life, or at least a life in which he would not be dependent on oxygen tanks to keep him alive.
As Vigliotti’s video about her son spread throughout the internet, Newsday photographer Alejandra Villa took notice and along with the help of editor Megan Miller, decided to record Nico’s latest journey in an effort to tell his story. Their documentary, “When You’re Ready,” was released last year, and has now been nominated for a New York Emmy award.
Villa said that Vigliotti’s tremendous drive to help her son continue living was all the inspiration she needed to make the documentary. “The story was about this incredible women that, for 21 years, never gave up,” said Villa. “She did whatever she needed to do to keep her son going.”
Unbeknownst to everyone involved, the film would end up serving as a look into the final year of Nico’s life.
Nico was born with a genetic disorder so rare that he was one of only two or three documented cases in the entire world. According to his mother, the illness doesn’t even have a name. It affected his lungs, brain and thyroids, although the umbrella term used to describe it was “pulmonary,” as his lungs suffered the brunt of the effects.
Vigliotti said that the air sacs in Nico’s lungs would harden over time “like concrete,” making it difficult for oxygen to flow through them easily. From the moment he was born, she was told that he would never be able to live a full life free of pain. Nonetheless, she never gave up on her son, doing everything she could to keep him comfortable and hopeful.
“Instead of living with pain,” Vigliotti said, “he lived with hope and faith and truly overcame some of the suffering that he had gone through.”
While the film was being made, the family sought to find a way for Nico to have lung transplant surgery. However, they were unsuccessful in doing so, because doctors deemed the muscles around his lungs to be too weak for the surgery.
After being forced to leave the home which his mother had turned into a de facto rehabilitation center to seek further help at a hospital, Nico was put into a medically induced coma from which he never woke. He died on April 15, 2018 at the age of 21.
Over the course of his 21 years, Nico underwent over 100 procedures, and yet doctors were never able to distinguish what was going to happen the next day.
“They gave up hope many years ago, but I didn’t,” she explained. “We were living on a battlefield and I was okay with his. So long as I was by his side with his brother, he knew he would be protected.”
Nico’s brother, Dante, is about a year younger than his sibling and is now a senior at Stony Brook University, where he studies environmental science. He is currently taking a class outside of his major centered around respiratory conditions, as he has devoted a great deal of his free time to learning about medicine to better understand what his brother went through.
Dante said that he is truly happy to see that the documentary about his brother is receiving so much attention, because that’s what Nico would have wanted.
“It makes me smile every time I think about it,” he explained, “because that’s literally all he talked about during the few years it was being made. He wanted everything about him to get out there.”
Villa said that the award nomination comes second to the fact that the film was everything the Vigliotti family wanted it to be. “The most rewarding part is to see the joy in Debbie’s face that her son’s story was told,” she explained. “It’s great to have recognition, but to me it’s more about her story having recognition.”
Vigliotti said that the documentary is an excellent way of preserving Nico’s legacy while also providing inspiration for other families who are struggling at the hands of an illness.
“I feel there is hope once again,” she said. “Not for my son anymore. That I know is too late, but I know this can help others. If I spread enough awareness, maybe another child won’t have to go through this and maybe spare another mother from this suffering.”
“When You’re Ready” is available to watch for free at www.newsday.com/long-island/when-you-re-ready-1.20725736. Whether or not the documentary will win its Emmy will be announced during the New York Emmy Awards Gala on May 4.