I first saw Ashley Hegi on a TLC show about defying the odds of a rare genetic disease that causes premature aging. I was glued to the TV. Ashley was one of 53 people in the world and 3 in Canada with Hutchinson-Gilford Progeria Syndrome. I caught that same show 2 more times afterwards and, again, just could not switch channels.
Holy was she spunky!!
Sadly enough, at the age of 17 and a height of 4 feet, Ashley Hegi died last week (April 21). Some say she was lucky; there is no known cure to the disease, and most children with the condition usually die around age 13. I’m just sad for the fact that she died a month before her 18th birthday and three weeks before her high school graduation… Any of you who saw the TLC show knows that she must have had the dress ready, the dance moves down and a spunky speech to go with it all!
Ashley made it her mission to teach the world about progeria, appearing in documentaries, media reports, websites & youtube videos like this one:
She was the world’s oldest surviving progeria patient. I am sure she will be missed in her southern Alberta community, but one thing is for sure — she will be hard to forget — little person, little voice, but immense personality!