Family hopes to bring awareness to genetic disorder

HOUSTON (KTRK) -- A Fall Creek family says they're learning to make every day really count after their child was diagnosed with rare, and fatal genetic disorder.

While there's no cure for their son right now they're hoping his story will help save lives in the future.

From the outside, Sam Stander looks like a normal kid riding four wheelers with his sister and throwing the football with his family. But at an early age-- he wasn't hitting his developmental milestones and his mother Emily says she knew something wasn't right.

"I'm not happy with he's fine. He'll catch up. Don't worry about it," said his mother.

It took months of testing and changing doctors before the Standers found a diagnosis, Duchenne muscular dystrophy. It's a genetic disorder characterized by muscle degeneration and weakness. As of right now, it is 100 percent fatal.

"We were told to take Sam home and hug him because there's no hope. There's no cure. That's still true today but Emily and I knew we were going to fight," said Sam's father Nicholas Stander.

The Standers started "Sam's Soldiers" aimed at raising awareness about Duchenne's and money for research.

"We do a fun run for Sam's Soldiers. In the last two years since he's been diagnosed. We have raised over $80,000 for Duchenne research," said Emily.

Recently, Sam's been approved to participate in a drug trial for Duchenne's. The standers hope will lengthen his life expectancy. But no matter what -- they say their focus is on making each moment count.

"Emily and I both hope that we're doing everything we can -- even if it is a short time with us that it's the best time it can possibly be all around," said Nicholas.

There's an estimated 22,000 kids suffering from Duchenne's right now.

If you would like to donate to Sam's Soldiers, CLICK HERE.