Father with ALS hopes ‘Ice Bucket Challenge’ continues

August 26, 2016 - als

JACKSONVILLE, Fla. – The millions of people who helped attend in a 2014 “Ice Bucket Challenge” helped lift some-more than a $100 million to account ALS research. 

challenge 2

One Jacksonville father also participated, giving a concession and holding a plea to assistance find a heal for a illness he afterwards knew small about. But now, Chad Edenfield is in a conflict for his life opposite a same disease.

Chad, along with his mother Kelly and dual immature children were always active, holding in partial in activities like hydro-sliding behind a golf cart, to water-skiing during a family lake house.

So, when a Edenfields listened about a Ice Bucket Challenge in a summer of 2014, they were “all in” for another fun family activity — with a combined advantage of training their 9-year-old son Chase a significance of giving back.

WATCH: The Edenfields take partial in 2014 challenge

They donated $100 toward a quarrel to heal ALS. It’s a heal a Edenfield family now hopes for some-more than ever, with their possess father and father diagnosed with a illness that is holding over his body.

“From being means to doing anything we wanted to flattering most do in September, to hardly being means to travel now, it’s a genuine large change,” pronounced Chad.

In Jul of 2015, Chad initial beheld late during night his legs would stiffen. He couldn’t hook them during all, though a feeling would blur a subsequent day. Then he had problem lifting his 3-year-old daughter. His problems progressed to carrying a tough time usually unscrewing a top on a tube of toothpaste.

In Apr of this year, Chad was diagnosed with a lethal muscle-paralyzing disease, ALS.

“It’s tough examination everybody do what we used to do and not be means to do it anymore,” Chad said.

WATCH: Chad Kelly Edenfield’s full interview

Now, 4 months later, Chad’s 9-year-old son Chase tries to assistance — not entirely bargain a finality of his dad’s illness — though meaningful that somehow he wants to be his father’s hero.

“Do we know what we wish to do when we go to college?” News4Jax asked Chase.

“I wish 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 wish to find a heal for ALS.”

Joy and chase

That stipulation is one that would make any father proud, though for Chad and Kelly both, it creates them really emotional.

“Kills me,” Chad said.

“He doesn’t know a nitty-gritty,” combined Kelly. “He doesn’t know what’s what, what could presumably come.”

Chase will have a improved possibility during assisting to find a heal someday, interjection to a millions of dollars people from Jacksonville to cities opposite a nation all donated by a Ice Bucket Challenge.

Since that summer of 2014, dual vital discoveries have brought researchers like Mayo Clinic’s internal Neurogeneticist Dr. Rosa Rademakers closer to bargain how a illness attacks a body.

The initial find came in Aug of 2015. Johns Hopkins researchers discovered, in mice — that swapping a sold protein found in ALS patients, with another one designed to demeanour like a original, saved a body’s cells being broken by a disease.

WATCH: Dr. Rosa Rademakers explains advances in ALS research

Then, usually this July, a find of a gene’s tie to a neurological disease. Dr. Rademakers says a competition is now on, to find a approach to provide and presumably change that gene.

The some-more dollars donated will concede for some-more endless a research, like ways to envision a illness before it strikes.

“Identify people who are during risk of building a disease, even before they have any symptoms,” explained Rademakers. “Or, it will concede us to be means to contend who will have a quick illness course or delayed illness progression. These are really critical things that we’re still operative on.”

While Chad and Kelly optimistically urge 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 a review light and fun around a kids.

“Let’s not take out my shins or my ankles. I’ve already got adequate problems walking,” Chad pronounced to Chase as his son was skateboarding.

Though a investigate will expected not locate adult to a course of ALS in Chad’s body, he and Kelly wish you’ll continue to present toward ALS research, that usually competence save a subsequent gullible family.

“You never now,” pronounced Chad. “It’s like, we would’ve never suspicion I’d be in these shoes. Never in one million years.”

WATCH: Ice Bucket Challenges continue in Chad’s honor
Challenge 1 and Challenge 2

There is a GoFundMe page set adult to assistance a Edenfield family with ascent medical expenses. To learn more, go here.

The ALS core during a Mayo Clinic here in Jacksonville is a usually one in Northeast Florida that is a approved Center of Excellence by a ALS Foundation. Take a video tour.

Copyright 2016 by WJXT News4Jax – All rights reserved.

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