CBS Sunday Morning: Putting a Face on Rare Diseases
September 1, 2016
CBS (Source)—When children are dying of rare diseases that few people are working to cure, a closer look is required — which is just what one committed artist is providing. Our Cover Story is reported by Jim Axelrod:
His name is Sam Buck. And while his high-wattage-smile and infectious laugh may remind you of a favorite nephew, there is virtually no chance you’ve ever met a kid like him.
Sam, who will turn six on Tuesday, is one of just 250 people in the world who suffer from vanishing white matter (VWM) disease — a brain disorder that destroys white matter, a substance that helps transmit neural impulses, and leads to the loss of motor control.
There is no cure — and the disease is typically fatal by the age of 10.
“Every birthday feels like it’s another year less that you have,” said Sam’s mother, Allyson Buck.
“’Don’t turn six, ‘cause you are getting closer to ten?’” Axelrod asked.
“Exactly. There is still so much we want to do with him, and so much we want to see.”
Allyson and her husband, Nick, have kept careful track in the three years since their son’s diagnosis, as Sam’s speech has slowed down, and his ability to walk slowly erodes — leaving him now unable even to stand.
“I think it’s really hard for people to wrap their heads around the fact that a child as vibrant as Sam could be dying,” Allyson said.
The Bucks are trying to show Sam as much of the world as possible in the time they have left: He’s been to 30 states and 19 countries, from Mayan ruins in Mexico, to meeting his hero, Formula One race car driver Sebastian Vettel in Texas. He’s even managed to squeeze in a meeting with the Duchess of Cambridge.
“We don’t want waste all our time worrying about what’s to come,” Allyson said. “We know what’s to come. We want to be able to enjoy whatever time we have with him.”
It’s not a pretty thought, but it’s a real one for parents of kids suffering from rare diseases. Ninety-five percent of all rare diseases have no treatment options at all. With so few people suffering from them, there is no incentive for research and development of a cure.
That’s a fact not lost on Lucas Kolasa, an artist and curator of “Beyond the Diagnosis” — a collection of intimate portraits of children with rare diseases, like Bertrand, one of the first kids Kolasa painted for the traveling exhibit.
Bertrand was the first patient ever diagnosed with something called NGLY1 deficiency. He has hundreds of seizures every day.
“When I painted the portrait, I took the wheelchair out,” Kolasa said. “And I just made him look like he was having a good day. It’s not just a picture; it’s a real person that I’m dealing with.”
The objective is to humanize these diseases through portraits of kids like Theodora, who has a fatal heart condition; Megan, who suffers from a rare chromosomal disorder that slows the blood flow to her heart and lungs; and Hannah, who suffers from a rare form of epilepsy leading to progressive loss of motor skills.
“Maybe somebody will look at this and be inspired to maybe find a cure for it,” Kolasa said. “That would be awesome!”
“Beyond the Diagnosis” hopes to eventually put a face to all 7,000 of these rare diseases.
“It’s ambitious, but we’re going to do it,” said Patricia Weltin of the Rare Disease United Foundation, who hatched the idea of the exhibit. Her two daughters suffer from rare diseases.
“You can’t look at these portraits and not be moved. You can’t,” Weltin said.
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