Published: 28/08/2016 Tags: Ehlers-Danlos in the News

Putting a face on rare, incurable diseases

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.”

Read the complete original article

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