Lindsay Jones and Ryan Jones are married. Ryan is an Odessa firefighter and Lindsay is a stay-at-home mom, but what she does, requires 24 hour love and care, for little Raxton.

ODESSA, TX (KWES) - Lindsay Jones and Ryan Jones are married. Ryan is an Odessa firefighter and Lindsay is a stay-at-home mom, but what she does, requires 24 hour love and care, for little Raxton.

"I can't take him to the store, I can't take him to see a movie, I can't let him to play with other kids, he's too weak to do those things," Lindsay said.

Raxton has mylotubular myopathy, or MTM for short, which is a rare and fatal muscle disorder that affects movement. Children with MTM have muscle weakness and decreased muscle tone. Sadly, many children with this disease usually live up to the age of two.

"Raxton had a severe brain bleed whenever he was just a few months old, they told us he wouldn't make it the next 30 minutes to the hour," she said. "They said, 'I'm sorry for your loss' and he was still alive."

But for Raxton, it was a lucky day for him when he made it past his second birthday this year.

"He smiles all the time."

Lindsay and Raxton's nurses provide 24 hour care for him, making sure his airways are cleared otherwise he could stop breathing if it's not clean.

She and her husband Ryan posted a video of the MTM muscle challenge to raise awareness of the disease which has received more than 9,000 hits. The challenge involves the person to do any type of physical activity. They encourage you to try it and to donate one dollar to the Joshua Frase foundation, which would go to MTM research to hopefully one day put an end to the fatal disease.

Today we did the #MTMmuscleChallenge to help raise awareness for this fatal disease. If you are able to accept our challenge, please *Publicly* post a video doing some kind of physical activity, using #MTMmuscleChallenge. You can do anything from a roll on the floor, to something amazing that even most strong people can't do. (Let's make it fun!) We are also asking everyone that is able, to go to Pleasedonate.org and donate $1. By donating, this will help raise more money for research for a possible CURE. You are helping save lives!! We can't wait to see what you've got! **Please feel free to 'Like' and 'Share' this video to help spread the word** #RaxtonStrong #MTMmuscleChallenge #ChangeStartsWithOne #ToSeeThemRun Posted by Lindsay Jones on Saturday, October 29, 2016

"I don't just want it for him, I want it for all of them," said Lindsay. "I want all of the boys to be able to have some normalcy and be able to breathe on their own and walk, because Raxton isn't able to do those things."

Lindsay says she wants you and other families to know, whenever your children want to hold your hand, hug or kiss you, do it. And never take them for granted.