Updated: September 02, 2020 05:55 PM
Created: September 02, 2020 05:32 PM
A family in south Minneapolis is hoping to bring awareness to a disease that weakens a person’s muscles starting at a young age.
“One day I was going for a run and I think about my boys all the time and their disease. And I just decided to stop midway around Lake Nokomis and do 79 burpees,” said Sarah Kasner, who created the “#79 Challenge.”
While 79 burpees may just be a random number to some, it’s a meaningful number to the Kasner family.
“There are 79 exons in the dystrophin gene and my boys have something called ‘Duchenne Muscular Dystrophy,’” said Sarah Kasner.
6-year-old Caleb and 5-year-old Duncan (Dunky) Kasner of south Minneapolis have been diagnosed with Duchenne Muscular Dystrophy. Duchenne is a disease that takes the mobility of boys in early adolescent years and can take their lives in their late teens or early adulthood.
“The diagnosis for Duchenne is not very good. We were told upon diagnosis like late teens and early 20s would be their time of death, and they would start losing their ability to walk between 8 and 12,” said Sarah.
And that’s how the #79 Challenge was born.
The #79Challenge is where people can do something challenging 79 times to represent the 79 exons in the dystrophin gene.
Funds raised will help with Duchenne awareness, assist in publication of a kid’s Duchenne book featuring Caleb and Dunky, help with Duchenne research and assist the Kasner family with the medical and personal expenses
“That's actually part of the 79 challenge is we're producing, trying to publish print a book, that is a children's book about Duchenne, and it features Caleb and Dunky because it's a really good way to help both kids and parents understand the disease and also their bodies,” said Sarah Kasner.
Sarah’s husband, Dan, says it’s the outpouring of support that makes their family feel less alone.
“We get texts and stuff on Facebook of people who has run 79 miles, or they've biked 79 miles, or they've read 79 books,” said Dan Kasner. “To wake up and know people are thinking about us and praying for us is a big deal to get us through each day.”
World Duchenne Day is on Sept. 7.
You can learn more from the family’s website.
There is also a GoFundMe to get their book raising Duchenne awareness published.
Copyright 2020 - KSTP-TV, LLC A Hubbard Broadcasting Company