ALS supporters start new message, 'Every August until a cure'

This time last year, the ALS Ice Bucket Challenge was filling Facebook feeds across the world. Now, supporters are kicking off round two with the message “Every August until a cure.”

One local family understands people may see it as last year's fad, but for them, ALS is everyday life.

In August 2014 the patriarch of the Shirley family, Daren Shirley, was fighting a daily battle with the disease that spurred the Ice Bucket Challenge. Daren had been diagnosed on July 16 the year before. His family says it was on the baseball field that they first noticed something was wrong.

“He didn't have the zip on the ball like he used to,” Daren’s son Creighton said. “He just couldn't throw very hard.”

“He got to where he couldn't throw,” wife Amy Shirley explained. “He thought he had a pinched nerve.”

Soon doctors confirmed Daren was battling the same disease as the baseball legend it was named after, Lou Gherig.

“It's a monster disease,” Daren shared using a special device that tracks his eye movements.

“Monster disease. Monster,” his wife Amy echoed. “It takes away everything well not everything. It can't take away his spirit and his love for his family.”

Amy has watched as the disease stole Daren’s ability to walk and speak.

“I couldn’t do it without her and the kids they really take care of me,” Daren shared.

When Daren had a trach put in, it was Ice Bucket Money donated to the local ALS Association Georgia chapter that paid for a generator.

“If we have no power, we can't suction him. He won't be able to breathe without his machine,” Amy explained.

“You don't realize all the things you need and all the things you have to change in the home,” Daren shared.  “We had to widen all the doors, remodel the bathroom. Build ramps in and out ofthe house. Things you never think about.”

[Click here to donate to the ALS Association of Georgia]

Amy says the generator is a little bit of peace of mind, when it can be hard to come by.

“I don’t think a lot of people realize what a family with ALS goes through,” she said. “There's a song that I dedicated to him that says I will stand by him and I will until he end. I'll fight for him.”

The Shirley family says it has made it through the difficult journey with the help of family, friends and its local church.

“My salvation and faith in God keeps me going,” Daren shared.  “The disease brought me back to God. It is hard sometimes, but I'm going to keep fighting.”

The ALS Association Georgia chapter has committed $300,000 over the next three years in grant funds to be used by local families battling ALS as a result of the Ice Bucket Challenge. Click here to learn more.

WSBTV