For families living with ALS, it's more than just the Ice Bucket - WTOC-TV: Savannah, Beaufort, SC, News, Weather & Sports

For families living with ALS, it's more than just the Ice Bucket Challenge


Almost everyone has heard about the ALS Ice Bucket Challenge, and many of you have already doused yourself or friends for the cause, and it's working.

Since the challenge has swept the nation, it has raised around $80 million for ALS research, but do you really understand what it's all about?

ALS, or Lou Gehrig's disease, is deadly. No one beats it. It is a disease that causes a person to slowly lose all motor function of your body.

Don Rader has been dealing with the disease for over seven years, and he and his family are thrilled with all of the attention the challenge is bringing to this devastating disease. They said it's about time that people became more aware, but they said they hope it's not just a fun game.

They want people to truly known what the disease can do. Unlike the ice bucket challenge, where you can prepare mentally for the shock, there is no way to prepare for a diagnosis like this.

" I was trying to get ready for work and my hands were shaking so bad I could not put my belt on," said Rader.

Soon after that, Rader and his family got the news; he had ALS.

"You know your dad is not going to die one day," said Cole Rader, Don's son. "It is not easy to deal with."

For a man who used to golf, surg and fix houses, the deterioration has been anything but easy.

"He was so strong and able," said Blade Hardee, Don's daughter. "He could do anything. He was mister fix it."

"It's like sitting in a chair all day long and you can't move," said Don Rader. "The thing that kills me the most is if I get a fly or something on my nose, I can't shoo it way. It sits there and bites me and the mosquitoes bite me."

For the past seven years, the Rader family has had to change everything for him.

"Fighting a constant battle every day," he said. "There is always something. Always something."

"I am constantly having to find someone to sit with him because we cannot venture too far from the house," said Christa Rader, Don's wife.

She said it's a labor of love, but it takes everything out of them. Don Rader can't do anything on his own, with the only real movement he has left in his hand, which he uses to control his wheelchair.  

"He relies on [Christa] for everything," Hardee said. "It is heart wrenching, to say the least."

For many years the family has suffered while a majority of the population didn't even understand.

"I would say Lou Gehrig's disease, and they would look and say, ‘What is that?'" he said. "No one knew what it was."

That has all changed now with the social media sensation the ALS Ice Bucket Challenge. It has raised millions of dollars for ALS research.

"All of the sudden this brought forth all this awareness and funding and all that," said Christa Rader.

"You know, if they work hard enough, they may find a cure," Cole Rader said. "I don't know, it may happen."

The next time you see someone dump ice water on their head, keep in mind the families that don't get to shake off the shock. The Raders live with it every day.

When asked what he was most afraid of, Don Rader said this, "Losing my family."

A couple of former SCAD students created a short film titled The Black Arrow, and it documents Don Rader's journey and the journey of his family as they deal with his diagnosis.

The goal of the film is similar to the ice bucket challenge; to raise awareness and understand why.

To view the short film, visit Vimeo, and to donate to a local ALS foundation, visit here.

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