BONNER SPRINGS, Kan. -- Two summers ago, millions of Americans got an icy thrill. The Ice Bucket Challenge raised $115 million to fight ALS which is also called Lou Gehrig's Disease. A Bonner Springs family didn't know much about ALS back then.
In August, 2014, Tiffany Andrewjeski's sons took the Ice Bucket Challenge, a fundraising phenomenon for the ALS Association.
"And my mom showed me this video of this guy in a wheelchair," said J.D., her 12-year-old.
"I didn't know what ALS was," said the 37-year-old Andrewjeski.
Now she knows she'll spend the rest of her life with ALS. The progressive, deadly disease is destroying nerve cells and movement.
As Americans took the challenge, Andrewjeski was already having symptoms including hand cramping and trouble with speech. After not getting answers from doctors, she diagnosed herself.
"I went to WebMD and all of my symptoms matched," she said.
Her symptoms now include uncontrollable emotions. She cried throughout much of her interview with FOX 4.
After her diagnosis was confirmed, Andrewjeski enrolled in clinical trials at K.U. Medical Center. In one study, she takes a pill that may help muscle function. She's noticed no difference, but is hopeful that the tens of millions raised through the challenge will result in ways to slow or stop ALS.
"They're making progress everywhere," said Andrewjeski.
That progress is being aided by Tiffany's Crusaders. Andrewjeski's friends gather with her monthly for social events and fundraisers for her and the ALS Association.
She said her friends and family are "everything" to her.
"She's still staying in there. She's not giving up," said J.D.
And neither are they.