Nearly 250 Gulf Stream School students took part in the ALS challenge in honor of Bill Shannon.
Watch video from the event
INSET BELOW: Anna and Bill Shannon have two children who are students at Gulf Stream School.
Jerry Lower/The Coastal Star
By Ron Hayes
To the scientists who seek a cure, it’s “amyotrophic lateral sclerosis.”
To the fundraisers, simply “ALS.”
To Americans of a certain age, it has been “Lou Gehrig’s disease,” ever since the Pride of the Yankees succumbed, just 37, on June 2, 1941.
To younger generations, it’s become the “Ice Bucket Challenge disease.” Pour a bucket of ice-cold water over your head or make a donation to fight ALS — then challenge a friend to do the same and post the video online.
But to the students and faculty at Gulf Stream School, this is “Mr. Shannon’s disease.”
One afternoon last month, almost all of the 250 students and much of the faculty stood in a very long line on the athletic field, holding buckets of very cold water.
For Bill and Anna Shannon, the private school is a family tradition. William, 18, and Christopher, 15, have graduated. Nicholas, 13, is an eighth-grader, and Christopher, 11, in sixth.
The youngest, Finn, was only 3 months old when Bill Shannon got his diagnosis in June 2011.
“No one in our family knew what ALS was when I was diagnosed, except my sister,” he remembers. “And she told me not to look it up.”
Of course he looked it up.
ALS is a progressive disease in which the motor neurons from the brain to the spinal cord and muscles slowly weaken. Muscle control is lost, ending in paralysis and death.
The disease is rare. About two people in every 100,000 get it — 30,000 in the U.S. at any given time.
Only about 20 percent of patients survive five years after being diagnosed.
Three years after his diagnosis, Bill Shannon, 48, uses a motorized wheelchair. His speech is thick and sometimes hard to understand, but his smile is wide and his handshake still firm.
“The ALS Challenge has been very good for my kids because there’s been a lot of giggles and laughs with it,” Shannon said, “and there aren’t a lot of giggles and laughs with this disease.”
On Sept. 12, the giggles and laughs began after class as the students, kindergarten through eighth grade, ran about the athletic field filling their plastic buckets with ice and water.
The pre-K kids like Finn Shannon were excused — can a 3-year-old understand that this is philanthropy, not punishment? — and about a dozen parents declined to have their children take part. But by 2 p.m. the participants stretched along a chalk line in the grass, oldest to youngest, south to north.
“Go!” yelled Bryan Cook, the math teacher, upper school coach and challenge organizer.
“No!” yelled Bridget Langford, the science teacher and volunteer videographer. “Not yet!”
But Vincent Fimiani, first in line, had already gone.
As the other, drier students looked on, amused, the eighth-grader dripped ice water.
“I jumped the gun,” he said. “Mrs. Langford said ‘no,’ but it was too late.”
This was the second time Vincent had taken the challenge. Does it get warmer the second time?
“No, it does not.”
What does it feel like?
He didn’t pause to consider.
“It feels like all your nerves are standing on end,” he reported. “It’s not pleasant.”
Now they were ready for take two.
“Go!”
As Bill Shannon steered his wheelchair past the older students like a general inspecting his troops, each child saluted by upturning the ice-cold bucket when he passed. Ultimately, though, Shannon’s wheelchair could not keep up with the students’ eagerness to douse themselves, and he pulled to the side and watched with a wide smile.
All down the line the field exploded in giggles and laughs. Andrew Young, 13, had also endured the challenge before, along with his brothers Daniel, 17, and Jack, 15.
“It’s very cold. You expect it the second time, but it’s still very cold,” he explained, school shirt and khakis drenched. “But we’ve known the Shannons since they moved here.”
Cook, the teacher and challenger, was also drenched, but grinning.
“I was so busy I didn’t have time to think,” he said, “and then when it was over, I felt a tear. Sometimes we have fundraisers and say, ‘Please donate $5,’ but this time we left it open.”
The Gulf Stream School Ice Bucket Challenge had collected about $700 in cash that day, Cook said, and an unknown amount in online donations to als.org.
As of Aug. 29, the wildly popular ice bucket challenge had raised more than $100 million to cure the disease a lot of shivering challengers are no doubt challenged to pronounce.
As the students squeezed water from shirttails and inspected some parents’ cellphone photos, the Shannons moved to the shade to greet family and friends.
“Bill’s always said, ‘Do what you want to do today,’ ” Anna Shannon said, “so he lived his bucket list before his diagnosis. Now a lot of people are learning to value their life and health by seeing what we’re going through. It’s a wake-up call for them. We’ve been blessed.”
She climbed on her husband’s lap for a picture.
“The ice bucket challenge shows what social media can do,” Bill Shannon said. “Imagine the awareness it’s brought, and the sense of community it’s brought. And it’s brought a little levity to an otherwise difficult situation.”
In the years before his diagnosis, before he looked it up, Bill Shannon had no doubt heard about Lou Gehrig’s disease without, like so many others, knowing quite what it is.
Now he knows, and if the ice bucket challenge endures, someday soon no one will call this Lou Gehrig’s disease anymore.
“I bet he wouldn’t mind,” Bill Shannon said.
See a video by 5th grade student John Mahady at www.thecoastalstar.ning.com.
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