Awareness Lifts Spirits

November 25, 2014

Sophomore Devon Allowitz was four years old and “didn’t really know what was happening” when his grandfather, Donnie, moved in.

He didn’t know that his grandfather was suffering from Amyotrophic Lateral Sclerosis (ALS). He didn’t know this disease would seize his grandfather’s ability to speak and walk. He didn’t know that ALS would ultimately take his grandfather’s life.

“I just knew he was my grandpa,” he said, “and he wasn’t well.”

ALS – or Lou Gehrig’s disease, named after the former New York Yankee – is a neurodegenerative disease affecting the nerves in brain cells and the spinal cord, taking a life every 90 minutes.

“It essentially leaves a patient paralyzed while leaving their mental facilities intact,” Lizzy Melton of ALS Association (ALSA) said.

So far, there is no cure. The illness took Gehrig’s life in 1941 and Donnie’s in 2004.

Georgia’s ALSA chapter funds research for a cure at Emory and other universities, as well as provide care services for those suffering from the disease, medical equipment, and support groups.

Melton has worked for Georgia’s chapter for a little over a year and calls her job her “passion.”

“Working with patients and families living with ALS is difficult and rewarding at the same time,” she said. “[The disease] not only affects the patient, but their entire . . . support system.”

Devon’s father, Michael Allowitz, can recall the illness’ toll on his father during the diagnosis in 2001. Sixty-three-year-old Donnie was a Maui tour guide and award-winning bodybuilder, and he struggled with coming to terms with the diagnosis.

“He was a little bit in denial, thinking he could continue to earn money to support him and my stepmother,” Michael said.

A specialist in San Francisco first diagnosed Donnie with a condition similar to ALS and said he would live much longer – a statement that turned out to be false. He died three years after this doctor’s visit.

Towards the end of his life, Donnie and his wife moved into the Allowitzes’ spare room.

“While it was tough on the family to have seven people in the house, it was great that my kids were able to spend time with him towards the end of his life,” Michael said. “At that point he was showing many signs of the disease, and was convinced he had ALS.”

Donnie’s initial symptoms consisted of slurred speech, a common indication of the disease. Despite his worsening condition, Devon recalls living with him as “a good time.”

Because he was so young, Devon doesn’t remember feeling worried or concerned for his grandfather’s health.

After a while, however, Donnie’s condition deteriorated, and Devon took notice.

“He had trouble speaking, and then he couldn’t walk anymore. He had to get a wheelchair and a speaking device.”

Communication with Donnie now required him a computer so he could type what he wanted to say. Yet the disease continued to overpower his body.

“[During] the last year, he could barely hold himself up on his feet,” Michael said.

Before his passing, Donnie and his wife retreated to Michigan “so he could die in a better place,” Devon said.

“I just remember my dad telling me he went on vacation,” he said, “and he wasn’t coming back.”

Three years after diagnosis, Donnie lost the battle against ALS.

The few memories Devon holds of his grandfather resurfaced when the ALS Ice Bucket Challenge began trending.

While its origins remain unclear, the Ice Bucket Challenge went viral from July to August of this year. The trend took the internet by storm with a simple rule: either donate $100 to the ALSA within 24 hours, or donate $10 and film themselves being doused in freezing water.

“I started to think of him more and more whenever I saw [the videos],” Devon said.

He completed the challenge in honor of Donnie, and was angered by the challenge’s opposition from some social media users.

“[The ice bucket challenge critics] kind of pissed me off,” he said. “People are just trying to raise awareness for a good cause.”

Criticism claimed that the challenge videos distracted from the cause and wasted drinking water.

To address the latter, actor Matt Damon soaked himself in clean toilet water. Vans shoe company owner Steve Van Doren got drenched on the beach with Pacific Ocean water in light of California’s drought.

This outpouring of celebrity and company support has garnered widespread attention for the disease. Since July 29 of this year, the ice bucket challenge raised $115 million in donations to the ALSA.

“The ice bucket challenge is an answered prayer,” Melton said. “More people than ever are talking about ALS, and that is a fantastic thing in my eyes.”

This increased financial support will aid the association with funding treatment and cure research.

“I get to come to work every day with a purpose,” Melton said, “to make life better for those living with ALS, and to hopefully one day be able to say there is a cure.”

While there was no cure for Donnie, he is not forgotten by those close to him.

“My father was liked by everyone. That was his greatest gift,” said Michael. “I was always proud to tell people I was his son because they loved him so much.”

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