Wilmington man one of 18 in US with rare disorder - WECT TV6-WECT.com:News, weather & sports Wilmington, NC

Wilmington man one of 18 in US fighting Wolfram's syndrome, which will steal his vision, hearing & life

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The look of pain and worry on Adam Zwan's face before being rushed to the hospital The look of pain and worry on Adam Zwan's face before being rushed to the hospital

WILMINGTON, NC (WECT) – Filmmakers are following a man from Wilmington who is suffering from a rare disorder, in hopes of raising money for research to fight the disease.

Adam Zwan, 25, is one of 18 people in the United States to be diagnosed with Wolfram Syndrome, a rare disease that steals the vision, hearing and before the age of 30 - the life - of those who have it.

Tonight, while we were talking to Adam and his mother, Kay, he started experiencing severe abdominal pain and she rushed him to the hospital.

This real-life drama played out in front of our cameras and those of the documentary team following Adam and his mom.

The crew is working on a film, A Light in the Shadows, which will follow those who have the disease.

Before leaving for the hospital, Kay talked to us about what the project means for her son.

"It has actually boosted his spirits because it's a distraction from what it is that he's challenged by because he is hopeful that by giving it a voice and giving him a voice and giving other children a voice, that there will be more funding for the research they really need," Kay said.

Adam's journey began when he was 7-years-old. He was diagnosed with Type 1 diabetes; it eventually turned into diabetes insipidus. When he was 17, Adam was diagnosed with Wolfram's.

Despite living with the disorder, Adam graduated from UNCW with a degree in Community Health and a GPA of 3.8. He works a part-time job at Davis Health Care Center, where he teaches exercise and health classes.

"He has inspired me on many levels, most of all through his determination and his tenacity," Kay said. He is defined much more than by Wolfram's; he is much more than his disease."

Kay hopes the project will raise awareness and help raise money for more research.

"There are millions and millions invested in Alzheimer's research, which is a neurodegenerative disease of the aging, yet we have these young children – who are dying before the age of 30 – and we fight for the funds," Kay said. She went on to explain that if there is progress in one of the neurodegenerative diseases, it will likely benefit those who suffer from both diseases.

Jocelyn Leroux is the filmmaker behind the project.

She says her journey started with a little girl named Ellie White.

We first introduced you to the 11-year-old last summer as she learned how to surf in Wrightsville Beach.

Ellie is embracing all she can out of her life, before she loses her hearing and sight.

She recently appeared on Broadway, after appearing in a dancing troupe on America's Got Talent.  

Leroux was Ellie's dance instructor in her hometown in Colorado.

When she found out Ellie was fighting the disease, she set out to do something to help her and others like her.

"I'm not a doctor or a scientist – I'm an artist and a filmmaker, so I am going to try to use my skill set to help them," Leroux said.

All profits from the film will go to the Ellie White Foundation, which raises money for scientific research for Wolfram syndrome and other rare genetic disorders.

At last check, Adam was admitted to the hospital because of his abdominal pain; however, doctors apparently cannot give him any pain medication because that could shut down his kidneys.

We will keep you updated on his condition and his fight.

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