Father with ALS hopes 'Ice Bucket Challenge' continues
2014 challenge funded two medical breakthroughs
JACKSONVILLE, Fla. – The millions of people who helped participate in the 2014 "Ice Bucket Challenge" helped raise more than a $100 million to fund ALS research.
One Jacksonville father also participated, giving a donation and taking the challenge to help find a cure for a disease he then knew little about. But now, Chad Edenfield is in the battle for his life against the same disease.
Chad, along with his wife Kelly and two young children were always active, taking in part in activities like hydro-sliding behind a golf cart, to water-skiing at the family lake house.
So, when the Edenfields heard about the Ice Bucket Challenge in the summer of 2014, they were "all in" for another fun family activity -- with the added benefit of teaching their 9-year-old son Chase the importance of giving back.
They donated $100 toward the fight to cure ALS. It's a cure the Edenfield family now hopes for more than ever, with their own father and husband diagnosed with a disease that is taking over his body.
"From being able to doing anything I wanted to pretty much do in September, to barely being able to walk now, it's a real big change," said Chad.
In July of 2015, Chad first noticed late at night his legs would stiffen. He couldn't bend them at all, but the feeling would fade the next day. Then he had difficulty lifting his 3-year-old daughter. His problems progressed to having a tough time just unscrewing the cap on a tube of toothpaste.
In April of this year, Chad was diagnosed with the deadly muscle-paralyzing disease, ALS.
"It's hard watching everybody do what you used to do and not be able to do it anymore," Chad said.
Now, four months later, Chad's 9-year-old son Chase tries to help -- not fully understanding the finality of his dad's disease -- but knowing that somehow he wants to be his father's hero.
"Do you know what you want to do when you go to college?" News4Jax asked Chase.
"I want to be a scientist," he said. "A chemist."
When News4Jax asked Chase if there was anything specific he wanted to do as a chemist he said, "I want to find a cure for ALS."
That declaration is one that would make any dad proud, but for Chad and Kelly both, it makes them very emotional.
"Kills me," Chad said.
"He doesn't know the nitty-gritty," added Kelly. "He doesn't know what's what, what could possibly come."
Chase will have a better chance at helping to find a cure someday, thanks to the millions of dollars people from Jacksonville to cities across the country all donated through the Ice Bucket Challenge.
Since that summer of 2014, two major discoveries have brought researchers like Mayo Clinic's local Neurogeneticist Dr. Rosa Rademakers closer to understanding how the disease attacks the body.
The first find came in August of 2015. Johns Hopkins researchers discovered, in mice -- that swapping a particular protein found in ALS patients, with another one designed to look like the original, saved the body's cells being destroyed by the disease.
Then, just this July, the discovery of a gene's connection to the neurological disease. Dr. Rademakers says the race is now on, to find a way to treat and possibly change that gene.
The more dollars donated will allow for more extensive the research, like ways to predict the disease before it strikes.
"Identify individuals who are at risk of developing the disease, even before they have any symptoms," explained Rademakers. "Or, it will allow us to be able to say who will have a fast disease progression or slow disease progression. These are very important things that we're still working on."
While Chad and Kelly optimistically pray for a cure. Chad finds other ways to play with Chase and his 3-year-old daughter Summer, anyway he still can. And they do their best to keep the conversation light and fun around the kids.
"Let's not take out my shins or my ankles. I've already got enough problems walking," Chad said to Chase as his son was skateboarding.
Though the research will likely not catch up to the progression of ALS in Chad's body, he and Kelly hope you'll continue to donate toward ALS research, that just might save the next unsuspecting family.
"You never now," said Chad. "It's like, I would've never thought I'd be in these shoes. Never in one million years."
There is a GoFundMe page set up to help the Edenfield family with mounting medical expenses. To learn more, go here.
The ALS center at the Mayo Clinic here in Jacksonville is the only one in Northeast Florida that is a certified Center of Excellence by the ALS Foundation. Take a video tour.
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