HARRISON, Ohio (WKRC) - Many people learned more about the neuromuscular disease, ALS, in 2014 when the “Ice Bucket Challenge” went viral.
The fatal degenerative disease usually strikes men between the ages of 40 and 70.
Kari Robben, of Harrison, Ohio also learned about ALS during that Ice Bucket Challenge and that discovery changed her life.
Kari Robben was 27 and pregnant with her third child at the time. She'd never heard of ALS, but her hands were acting weird
“I couldn’t turn keys, I couldn't open caps, Andy had to help and you thought it was… didn't know. Doctors said ‘pregnancy induced carpel tunnel,’” said Kari.
It wasn't until after Emmitt was born that Kari was diagnosed as one of the youngest women in Ohio with ALS.
“She's stronger than I am, broke down twice, I cry lying next to her praying to God we can switch roles,” said Andy Robben, Kari’s husband.
Andy works for Liberty Township and Harrison. He puts out fires. This is one he couldn't douse. So he studied.
“Feel like. A lot of what’s happening to us… cancer, ALS, Alzheimer’s… could be from preservatives,” said Andy.
In an effort to fight the fire, the Robben’s dug up the backyard.
“Zucchini… yellow squash… cucumbers… this is all you'll eat,” said Andy to Kari. “Yeah,” said Kari in response.
If medicines couldn't slow the progression, then they'd turn to the chickens.
All their own eggs, canning their own peaches, jalapenos and anything green.
“These are green beans, then honeydew, watermelon, squash, brussel sprouts,” said Kari.
Brussel sprouts aren't many people’s favorite, but they sit well with Kari. Her latest checkup confirmed no progression of her ALS since January.
But time is not on her side.
“We are gonna build some ramps at the house for when she's in a wheelchair. Big one-conversion van… yeah, that's what we're gonna have to fund,” said Andy.
Nearly all the firefighters that work with Andy donated at least 24 hours of comp pay to take out the carpet in the Robben house and put in flooring to make everything wheelchair accessible.
They also created an annual 5k Run and other fundraiser ideas.
“We're alongside every third day,” said Lt. Mike Rimroth of the Harrison Fire Department. “Gonna make sure his family is taken care of because his family is our family.”
There is no cure for ALS. Kari took pictures of Ella in her wedding dress and bought cards for all their 18th birthdays.
“I was just trying to think of moments far off, that I might not be here to see,” said Kari.
A bucket of ice water will wake you up and for some more than others since 2014, make you appreciate what you have.
“It's given us a much greater appreciation for life kids each other we try to make the most of every day and hope we get to do it again tomorrow,” said Kari.
Kari now spends her time in support groups and is becoming one of the areas greatest advocates for fundraising and research to find a cure for ALS.
If you would like to help or learn more, you can find a link to the ALS foundation here.
5 сен 2024
