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Dundalk Parents Educate Public About Batten Disease

Nick's Battle Foundation, formed by Dundalk residents John and Tina Heuchan, holds events to raise funds for research in honor of their son.

Blindness takes away one's sight.

Epilepsy causes seizures.

Alzheimer's disease slowly takes away a person's mental capacity.

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Lou Gehrig's disease eventually takes away one's ability to walk, talk and move.

Each of these afflictions is tough to manage. Combine them all together and you have Batten Disease.

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The disease was first diagnosed in 1903 and afflicts between two and four of every 100,000 live births in the United States, according to theNational Institute of Neurological Disorders and Stroke.

Nick Heuchan is one of those children.

The 14-year-old from Dundalk suffers from Juvenile Batten Disease, an affliction that has just 400 known cases in the United States, including four in Maryland, according to Nick's Battle Foundation. The foundation is an Essex-based organization founded by Nick's parents, John and Tina, to help combat the rare degenerative genetic disorder.

Batten Disease is so rare that the Heuchans often have to explain what it is to doctors during Nick's appointments. Even then, medical personnel aren't sure how to handle his situation. The Heuchans said they often had to assure doctors and nurses that the disease wasn't contagious.

"They still had to Google  it," Tina Heuchan said. "It wasn't in their medical books."

Nick's Battle Begins

The education for the Heuchans began eight years ago when Nick was first diagnosed. The Heuchans noticed something was wrong with their son at 5 years of age when he displayed vision problems, including having to move a third of the way closer to a vision test to read it clearly.

This led to a series of eye exams, including a conjunctival biopsy, over the course of several months. One finding after another led to genetic testing at the University of Massachusetts and finally to a diagnosis of Juvenile Batten Disease by  opthalmologist Dr. Janet Sunness on June 10, 2003.

"We got the right doctor at the right time," Tina Heuchan said, "because she'd seen it before. Most kids have anywhere between three to five years of testing to get the right diagnosis."

Dr. Sunness has diagnosed three cases of Batten Disease in children, all in the same year she first met Nick.

"It's very difficult to diagnose and we've just really had the proper genetic testing available for the last decade," Sunness said. "Parents are already bracing themselves for a child that's blind, and then they learn their child has Batten Disease. It's not easy to handle.

"We're hoping from a research standpoint that now that we understand the genetics of the disease we can push toward better treatment of it."

Tina Heuchan said it has been hard finding doctors who are willing to work with them because they are often unsure how to treat Nick. She said the family has finally found a good group of doctors who listen to and work with them.

She has created a brochure about the genetic disorder that has robbed Nick almost entirely of his vision and is now causing seizures, leading to his mental and physical deterioration.

Today, Nick is a good-humored sophomore in his fourth year at the Maryland School for the Blind. Nick now learns at a fourth grade level. Two years ago when he was an eighth grade student, he was learning roughly on a par with others his own age, John Heuchan said.

According to the Heuchans' brochure, Batten Disease is inherited as one of four main types: infantile, late infantile, juvenile and adult. The brochure describes Juvenile Batten Disease as taking the lives of those afflicted "in the late teens or early 20s, although some may live into their 30s."

The brochure was created as a product of Nick's Battle Foundation, which the Heuchans formed in honor of their son "to educate the public about Batten Disease and to raise funds for research and financial assistance for those who may need it."

John and Tina Heuchan have handpicked members of the foundation's board, which meets once a year in Essex, based on those individuals who know and care for Nick and have come to understand his disease.

Nick's Battle Foundation periodically holds fund-raising events. "If there’s ever a family that’s just down and out destitute, that needs something, I want a phone call," John Heuchan said. " … If we don’t have it, we’re going to come up with it."

Tina Heuchan said the foundation wasn't formed to raise money for Nicholas, but for research to combat the disease.

"Even if Nicholas isn’t here, you still need the research, and that’s important," she said. "We need a cure. We need to stop this. We need awareness."

Living Life to the Fullest

In the meantime, John Heuchan said they try to enjoy life every day and appreciate every moment they can together.

"We’re trying to do a lifetime in a short period of time," he said. "We try to cram as much in as we can because we know one day it’s going to stop."

The family, including Nick's older sister Addie, who is as much an advocate for Nick as their parents, until recently spent the weekends together drag racing, an activity Heuchan said brought the family closer together.

Nick and John Heuchan are also actively involved in Boy Scouts, as their troop meets weekly atin Essex.

"[Nick] can be [a very vibrant person], although we struggle with a lot of mood swings and a lot of anger, but we try not to focus on that," Tina Heuchan said. "We try to focus on the happiness and the important milestones."

Tina Heuchan, who said her son's battle has taught her to savor every minute with her children, called Nick her "greatest teacher."

“He makes you look at life differently," she said. "You don’t look at things the way other people see things. You see things at face value.

"You learn to appreciate small things, things that most people don’t notice. I just tell people appreciate what you have, and hug your kids everyday."

"It’s hard for anyone to watch their child go; nobody wants to let go," Heuchan added. "So we don’t, and that’s what keeps us going."

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