News about making a difference

Turning tragedy into triumph

By CYNTHIA McCORMICK
STAFF WRITER

MASHPEE - Having a child with an incurable, paralyzing disease changed the lives of Kelly and David Kooharian forever. And for the better, the couple will tell you.

The tragic turn of events compelled David into a career as an oil painter, and impelled the couple to craft a new life of cheerful duty and selfless service around their four children.

At the center of their life is their oldest son, Anthony. Now 13, Anthony was diagnosed with a degenerative genetic disorder known as metachromatic leukodystrophy when he was 2½ years old. The genetic disorder impairs the growth of the myelin sheath, the fatty covering that acts as an insulator around nerve fibers.

Anthony, then a silky-haired toddler with large brown eyes, had seemed completely normal until age 1, when he gradually began losing strength. He never did learn to walk. By age 3 the chatty tot had lost his ability to crawl, speak and even eat on his own. He couldn't cough on his own either, and was subject to bouts of pneumonia.

By November 1995, Anthony was a Hospice patient. "They said maybe he would live to be 4," David said.

Kelly, a nurse, and David, a construction worker, gave up their jobs to care for Anthony around the clock. By that time, they also had a healthy 1-year-old, Sammy. But the illness of their firstborn had dealt their dreams an almost unendurable blow. They lost income and housing. David's mother, who was especially close to Anthony, died of cancer.

Anthony defied doctors' expectations and clung to life, albeit tenuously.

"At the time, it was hour to hour, breath to breath," David said. To let off emotional steam, David began painting and started selling his art as the family grew. Now in addition to Anthony and Sammy, who is 9, the Kooharians also have two daughters, Madison, 7, and Anna, 2.

"Kelly said 'These are pretty good' and took the paintings to a gallery," David said. The paintings sold, and the family's church at the time, the Church of the Messiah in Woods Hole, helped organize an art show benefit that kept the Kooharians afloat financially.

"That helped us at a really critical time," David said. "That carried us for about a year." Since then, Anthony's condition has stabilized and David has emerged into a full-fledged oil painter represented by galleries on Nantucket and in Wellesley. Described as a realist, his luminous paintings depict Cape Cod and New England scenes as well as human figures.

David said most of the family's income comes from his annual one-man shows, the next one of which is being held Thursday from 6 to 8 p.m. at the Coonamessett Inn in Falmouth.

Giving something back

David will donate half the proceeds of one painting, Quissett Harbor Mornings, to Wings for Falmouth Families, an organization that helps families experiencing medical crises.

"The only thing that got us through financially was that the community reached out to help us," Kelly said about Anthony's preschool years.

"They are just an incredible family. I met them a few years ago," said Lisa Asendorf, the founder of Wings for Falmouth Families. "I'm just amazed they are being so generous."

Her organization provides financial aid to families going through a medical crisis or a tragedy, so family members don't have to decide between being with a sick child or spouse or going to work to pay the bills.

"They shouldn't have to make the choice," Asendorf said.

Her organization is also doing the "Men of Falmouth" calendars as a fundraiser. Receiving half the proceeds of one of David Kooharian's paintings, which sell for thousands of dollars "will help," she said.

In the Kooharian household, David and Kelly try to keep Anthony's illness in the background of their daily life.

Indeed, Anthony's condition is so integrated into the way the family lives that it doesn't seem out of the ordinary or even particularly tragic.

On a recent day, physical therapist Roy Carter worked on Anthony's chest and hands to reduce congestion and maintain flexibility in the paralyzed child. Tutor Lori Weiner sat next to him on the wood floor and read him a story. At her side sat Anthony's sister Madison, reading a magazine.

Toddler Anna wandered over to look at Anthony's oxygen machine, parked next to a wood bureau. When Anna sees Anthony coughing she comes over with a suction cup and pats him on the back, David said.

"All the kids pitch in," he said. "They don't have the luxury of being irresponsible." As if to prove a point, Sammy takes Anna outside to the swing when the toddler gets antsy.

The children are all home schooled and help participate in Anthony's school projects, such as designing a better garbage can.

Anthony does his schoolwork on a special computer system called "EagleEyes." Set up by students at Boston College, EagleEyes allows Anthony to pick out text and pictures by moving his eyes up and down and left and right.

Electrodes on his head and temples convey his movements to the computer. On a recent day the screen displays blocks depicting, in words and graphics, different emotions. Kelly asks Anthony to pick out his emotion.

To the reporter's relief, Anthony selects "I am - excited" instead of "uncomfortable," "tired" or "stop." Several times during the process Kelly uses a manual suction device to clear mucus from Anthony's throat. The Kooharians decided on the small portable device over a suction machine because it is less obtrusive and easier to transport on family trips to the library and the pond.

Once a year, the family goes to North Carolina for vacation and to New Hampshire for NASCAR races. Anthony has loved the colors and speed of NASCAR since he was little, and the family has "garage passes" to meet the drivers.

Kelly and David said they can tell by the glow in Anthony's eyes how much he enjoys his outings. Back home he gets on EagleEyes to craft "thank you" letters to NASCAR team owners.

"Anthony's perfect the way he is," David said. "He's the center of it all. It's out of him everything has sort of grown up. We wouldn't be who we are without him. We really understand every day is a gift."

Cynthia McCormick can be reached at cmcormick@capecodonline.com.
(Published: August 15, 2005)

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