ALS survivor warms up to icy challenge

LITTLE COMPTON, RI (WPRI) – Ginny Curtis guides a needle through her embroidery pattern with hands that are steady and accurate.

“It’s beautiful isn’t it,” she asks, before getting back to her hobby. “Some don’t have use of their hands anymore.”

To say this Little Compton mother of four and grandmother of seven feels lucky is an understatement.

She chuckles along with her husband Wayne at the huge splash an icy fad is having on awareness and fundraising for the incurable disease that rocked their world almost three decades ago.

“The doctor gave me three to five years,” she says, remembering back to that October day in 1987 when she was told she had Amyotrophic Lateral Sclerosis. “And before I knew it, it was 10 years and then I thought wow, lucky me.”

She’s ecstatic to have survived even longer to watch her children have seven children of their own.

“I didn’t have any grandkids then. But now I do and I can really enjoy them,” she says.

“I don’t know how much of a fundraiser it’s going to be,” her husband tells us. “But it certainly is an eye opener when the ice hits your head.”

They’re first glimpse of ALS, also known as Lou Gehrig’s Disease, hit almost when Ginny’s speech was suddenly slurred and she wasn’t as sure on her feet, and then she fell while waving at someone from their garden.

“We knew we were in trouble,” he says. “But you start actually being very aware of your present tense and the life you’ve got and the life you’re leading.”

They’re amazed at how the ice the bucket challenge is soaking social media with everyone from strangers to their grandchildren dumping ice water on their heads, while challenging others to do the same or to donate money to the ALS Association.

The Rhode Island chapter of the ALS association has seen a sharp uptick in donations since the challenge started going viral at the end of July. Executive Director Nancy Feroldi says during the past two weeks, about $10,000 dollars in donations can be linked to local ice water dousing.

National statistics indicate the ALS Association’s 38 chapters have received $4 million in donations during that time, compared to just over $1.1 million for the same period last year.

“This is fantastic,” Feroldi says. “We’re happy to be a part of it. The money donated locally will help assist local patients and families with respite care, equipment loans and other services.”

Curtis, who credits her daily dose of 28 tablets of four different vitamin supplements as one reason why she’s one of longest surviving ALS patients in the country, also thinks the challenge is fun.

“I would do it,” she says with a smile. “If it was a nice day, I would do it.”

While she will wait for some heat, we accepted her challenge as you can see in the video version of this story. And we in turn challenged Rhode Show anchors Will Gilbert, Michaela Johnson and Brendan Kirby to get their ice on…their heads.

Send story ideas to Walt at wbuteau@wpri.com and follow us on Twitter: @StreetStories12 and @wbuteau.

 

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