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NYC Fashion Photographer Focuses on Rare Disease in New Grand Central Show

By Mary Johnson | October 25, 2012 7:08am

MIDTOWN — A New York City fashion photographer has trained his lens on a group of young people suffering from a rare genetic disease for a new exhibition that goes on display inside Grand Central Terminal Friday.

The subjects range in age from 4 to 30 years old, and all have been diagnosed with Hunter Syndrome — a disorder in which long chains of sugar molecules are not broken down correctly and build up in the body, causing severe bodily damage, according to the National Institutes of Health.

The disease is incurable and causes certain mental deficiencies and physical deformities, but photographer Rick Guidotti said his goal is to help those affected by Hunter Syndrome see their own beauty.

“These are great kids. These are kids living with the syndrome and certain challenges,” Guidotti said in a phone interview. “They’re beautiful.”

The exhibit inside Grand Central, created in partnership with the medical company Shire Human Genetic Therapies, will run for one day only and is intended to raise awareness about Hunter Syndrome, Guidotti said.

The photographer, who in the past has focused his lens on supermodels such as Cindy Crawford, pursued the project through Positive Exposure, the nonprofit organization he founded allowing him to use photography to transform how people view those struggling with certain diseases or disorders.

In his first such project, which he took on in the late 1990s, he photographed children with albinism, or a lack of pigment in the skin.

He was intrigued by the disease, but all the images were starkly medical and functional, creating “horrible images” depicting children in harsh lighting with black bars masking their eyes, Guidotti recalled.

The photog said he worked hard to convince members of organizations that dealt with albinism that his images would not be voyeuristic or negative. His first subject was a young girl named Christine.

“She was absolutely beautiful,” Guidotti recalled. “[But] I instantly became aware that this kid had zero self-esteem.”

So Guidotti pulled out all the classic fashion-photographer tricks, blasting Christine with a fan and playing music to make her feel like a model and not a specimen.

“She got it. For the first time, she saw beauty,” Guidotti recalled. “When she left, she was kissing everybody on both cheeks and saying, ‘Ciao.’”

Guidotti said his work provides a confidence boost for those struggling with disease and also for their families, who many times shy away from cameras and attention. 

Another central part of his work is raising awareness about various disorders and changing perceptions among the general public.

“It really is about making big changes,” Guidotti explained. “Every mother, every father wants the world to see their kid through their eyes.”

For the upcoming exhibit, titled “Hunter in Focus,” Guidotti profiled nine individuals who have been diagnosed with the syndrome, a disease that primarily affects males and can lead to severe mental retardation, stunted growth, enlarged internal organs and deafness.

The exhibit will appear in Grand Central Terminal on Friday before embarking on an international tour that will make stops at several locations in the United States, as well as in Berlin and Warsaw, Guidotti said.

“Let’s show a million people what this looks like. Let’s change lives. Let’s change public perceptions and attitudes,” Guidotti said. “There’s such beauty.”

The exhibit will be on display inside Grand Central Terminal on Friday, Oct. 26, from 8 a.m. to 7:30 p.m.