Imagine slowly losing your ability to hold your own child, stand up and cheer for your favorite team, or even walk. This is Diana Madurzak’s reality after being diagnosed with the motor neuron disease ALS in 2009.
Unable to speak, her husband Bruce shares her thoughts, which she transmits to him via an electronic device.
“I was devastated when I found out, I knew what it was when a co-workers husband passed away from it and that it was terminal,” said Diana. “I manage with a lot of prayers, today I eat all my meals through a feeding tube and spend most of my days in bed. I also have breathing treatments to slow the progression of the disease.”
Diana is not alone, as nearly 30,000 Americans are diagnosed with ALS every year, that’s once every 90 minutes.
Life expectancy in a typical ALS patient is three to five years, so to help raise awareness Diana is working with the Les Turner Foundation, on their newest campaign, Freeze ALS.
Playing off the idea of the ice bucket challenge, the foundation has set out a number of life-size ice sculptures in Chicago of those who’ve faced being frozen by this disease.
“The ice melting is an analogy of what ALS does to a persons body, it slowly melts away at your muscles until there’s nothing left and there’s no movement anymore,” said Jordyn Landberg, Marketing and Communications Manager with the Les Turner ALS Foundation.
Diana was one of twelve people around the area who were featured in the sculptures. She had the chance to not only see and feel her own sculpture firsthand, but realize how her story has touched the lives of others.
“It was a great day out there, she had a great time, I mean there was tons of people who stopped by and it gives more people the knowledge that we didn’t have five years ago, we didn’t know what ALS was and now people are finding out. The more they know the better off they are,” said Bruce.
Once frozen in fear, those worries have now melted away, feeling she’s done her part for the fight against ALS.
“It gives me hope that some day we will find a cure,” said Diana.
“She hopes that her part of her research that they’ve done on her, maybe her name will be associated with a cure.” said Bruce.
If you want to learn more about ALS or would like to donate to the foundation, visit lesturnerals.org.
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