Family fights against time for son with terminal disease - KAIT Jonesboro, AR - Region 8 News, weather, sports

Family fights against time for 6-year-old son with terminal disease

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JONESBORO, AR (WMCTV) -

A Mid-South couple is racing against time to save their son's life. Tucker Ward suffers from a rare genetic disorder for which there is no treatment, but his parents say an expensive clinical trial could stop the disease in its tracks.

Tucker's joyous laughter is music to his parents' ears. Bryon and Ashley Ward don't know how much more time they have with their 6-year-old son.

"Tucker doesn't speak words, but he still makes plenty of verbal sounds," said Bryon.

Tucker suffers from a rare incurable disease called Type A Sanfilippo Syndrome, a genetic malfunction in the metabolism. At age 1, he wasn't progressing like other kids his age.

"The story that we got at the very beginning, and really up until he was about 3 or 4 years old, was just that he was developmentally delayed and he would outgrow whatever the issues were," said Bryon.

After seeing every kind of doctor imaginable, genetic testing revealed the devastating diagnosis.

"Five and a half years before we finally found the missing piece," said Bryon.

Doctors told Ashley her son's rare condition is terminal.

"That was it. That's all I can remember from the whole conversation, because my mind kept going back to I have no idea what that is," she said.

Tucker is missing an enzyme that breaks down sugar molecules the body uses, then discards. Those molecules build up in Tucker's cells, causing progressive damage.

"Eventually it attacks your major organs and eventually you know, you start having organ malfunction, and eventually organs shut down and ultimately leads to death," said Byron.

There is no treatment or cure. Life expectancy is anywhere from 7 years old to early teens. Tucker turns 7 in October.

"We gotta figure out what this is. Even though it's terminal, what does that mean? What are we gonna do for him? What's the process?" said Bryon.

The Wards are in a race against time to save their son.

There is a pending clinical trial that could slow down the effects of Tucker's disease, but clinical trials cost money, something the Wards are trying to raise through a campaign known as Operation Tucker Freedom.

They've joined other families like them hoping to raise enough money for the multimillion dollar research trial to begin, even though there's no guarantee Tucker will be accepted into the trial.

"This is the only option we have," said Bryon.

It's a chance they're willing to take, to hear their son's joyous laughter, to watch him run and play for as long as possible.

"In the back of our minds we're doing this for awareness, and if the money goes for someone else's child, it's still a cure. You know, that's what our goal is," said Ashley.

Tucker has already lost some of the mobility and basic skills he had as a toddler. Without a medical breakthrough he will continue to slip away from his parents' loving arms.

"We just keep going because he is ours and we're gonna take care of him ... Whatever it takes," said Ashley.

There are four types of Sanfilippo syndrome; Tucker has the most severe form. Operation Tucker Freedom will be raising money at ASU tailgate City on October 11. For more about Tucker's journey and the disease visit the #Tuckerstroop hashtag on Twitter or visit his website by following the link , http://www.operationtuckerfreedom.com/.

Some form of Sanfilippo Syndrome is seen in about 1 in 70,000 births. If both parents carry the defective gene, their children has a 25 percent chance of developing the disease.

There is prenatal testing available.

Copyright 2014 WMC Action News 5. All rights reserved.

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