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One week, 122 kids, $1,508: Why the ALS challenge is about more than cold water

By   /  September 2, 2014  /  No Comments

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Dennis Barr, whose wife, Mary, died of ALS in February, is not tired of watching the ALS Ice Bucket Challenge.

Using his smart phone, Barr filmed Jefferson Elementary School students dumping buckets of ice water onto the heads of their teachers Friday. Before the cold water flowed, first-grade teacher Christy Reid spoke for the Collinsville school’s five teachers and concluded the statement with the reason they wanted to accept the ALS Ice Bucket Challenge.

“Dennis, know that we love you. And Mary, this is for you,” Reid said.

Barr, the school’s custodian, said he was touched that a school of 122 students raised $1,508.20 in one week to help fund research for the disease that took his wife. He became emotional during Reid’s speech.

“I’m sure my camera shook just a bit as I was trying to videotape it,” Barr said.

The Jefferson staff’s support of Barr and the ALS Association did not start with the ice bucket challenge. They have been with him from the time Mary was diagnosed with ALS in Sept. 2010.

“Their support helped me out the whole time I was taking care of my wife,” Barr said. “They have also contributed many times to the ALS Association in Mary’s name. I cannot thank them enough, there is no way.”

Mary began slurring some words in Jan. 2010, Barr said. After many tests, many doctor’s office visits and a second opinion, she was conclusively diagnosed with amyotrophic lateral sclerosis (ALS), or Lou Gehrig’s disease, eight months later. By the end of the year, she could no longer speak. One year later, she could not eat without the help of a feeding tube or walk.

“It’s a horrible disease,” Barr said.

As Mary’s health grew progressively worse, someone had to be with her at all times. The Jefferson staff would often give Barr gift cards to give him a break from cooking for his family.

Barr and his wife, for the last three years she was alive, communicated using a keyboard the ALS Association provided. Barr would recite each letter until it was the correct letter in the word Mary wanted to spell. Mary would shift her eyes to the wall to signal Barr, who would type in the letter and begin the drill again.

“Her mind was fine, but it was the body that didn’t work,” Barr said. “That’s the horror of it, you are aware of what’s going on, and that there is no cure.”

Nor is there any treatment for ALS. When Mary died in February, at age 51, she was on oxygen to help her breath.

After going through the four-year struggle, Barr said he would never have imagined ALS would be getting this much attention. The ALS Ice Bucket Challenge, to Barr, is a wonderful thing.

“Whoever thought of it, it was one of the greatest things they could come up with,” Barr said.

Pete Frates, of Beverly, Mass., and an ALS patient, is credited with starting the Ice Bucket Challenge that has now spread around the world. The movement has helped raise $100.9 million dollars from July 29 to Aug. 29, the ALS Association reports. Over the same timeframe one year earlier, the group raised $2.8 million.

Barr’s three children, age 25, 19 and 13, have all taken the challenge. Their father is next.

Jefferson Principal Kevin Robinson was the last to have ice water poured on his head Friday at Jefferson. The Kindergarten class, as the top fundraisers for the week ($500 raised by 24 students), had three students chosen to douse the principal.

Robinson credited Barr with inspiring the large donation to the ALS Association from the small school.

“A lot of staff care about Dennis and that emotion is passed on to the students,” Robinson said.

As the five-year-old students struggled to lift the bucket, and then dump it on Robinson, Barr looked on and smiled, hopeful that the millions of ice bucket challenges all over the world this year will help fund the research to find the cause of ALS, and then the cure.

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