Odessa mom spreads awareness of her son's fatal muscle disease - KWES NewsWest 9 / Midland, Odessa, Big Spring, TX: newswest9.com |

Odessa mom spreads awareness of her son's fatal muscle disease

Lindsay spends several hours a day caring for Raxton (Source: KWES) Lindsay spends several hours a day caring for Raxton (Source: KWES)
(Source: Lindsay Jones Facebook) (Source: Lindsay Jones Facebook)
Ryan, Lindsay and Raxton on Halloween this year (Source: Lindsay Jones) Ryan, Lindsay and Raxton on Halloween this year (Source: Lindsay Jones)
Pep rally celebrates Raxton's 2nd birthday in Monahans (Source: Lindsay Jones) Pep rally celebrates Raxton's 2nd birthday in Monahans (Source: Lindsay Jones)
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.

"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. 

"Try to hug your babies, hold your babies or carry your kids around. Play with them, and do all the things you can because you can."

Copyright 2016 KWES. All rights reserved.

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