Beyond the Ice Bucket Challenge: Local woman battles ALS

JACKSONVILLE, Fla. -- You've seen it all over your Facebook feed.

In less than one month the viral "Ice Bucket Challenges" have helped raise more than $31 million for the ALS association. That's compared to the less than $2 million raised during the same period last year.

What is ALS?

But few people know about the pain and suffering of the illness also known as Lou Gehrig's Disease.

In 2010 shortly before retirement, Sondra Arvanitas began to experience cramps in her right hand and arm. She wasn't sure what the problem was but by 2012 she was dealt a hefty blow.

"It's like a death sentence," said Arvanitas. "You know that you're terminally ill. There's no cure."

The mother of two was diagnosed with ALS. The disease affects nerve cells in the brain and the spinal cord.

Progressively those who suffer from ALS lose feeling and the use of parts of their body and Lou Gehrig's Disease eventually leads to death.

"Unlike other people I have actually witnessed what a horrible disease it is," said Kalene Collins. "Because my grandmother has had it for nearly five years. So I accept the challenge."

17-year-old Collins took the ice bucket challenge in support of Arvanitas. She says while watching her granddaughter doused with cold water and ice, instead of letting out a chuckle she shed a tear.

"They're doing the ice bucket challenge in honor of me," said Arvanitas.

Neatly laid across her lap are Arvanitas hands. Tools she once used often to craft. That's no longer an option for her, she's now paralyzed from the waist up.

"I have to have help with eating," said Arvanitas. "A fork feels like it weighs 200 pounds. I literally almost can't get it off the table."

Still, she has date nights with her husband, gets around in her wheel chair and recently has had more than 31 million reasons to smile.

"I heard some 'bah humbugs' out there," said Arvanitas. "But I think it's great for the amount of money they raised. It may not be in my lifetime but hopefully they'll get a cure."

According to the ALS website as Wednesday thanks to the ice bucket challenge more 600,000 new donors have contributed to the ALS foundation in the past month.


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