'Please Help Our Son': Oklahoma Family's 4-Month-Old Diagnosed With Rare Disease

The condition is so rare there is only one place they can go for treatment in the country. 

Friday, June 21st 2024, 10:05 pm



An Oklahoma family is ready for the fight of their lives after a rare diagnosis. 

Madison and Trent Cantrell's 4-month-old has been in the hospital for a month. He was finally diagnosed with SMARD 1 this week. 

The condition is so rare there is only one place they can go for treatment in the country. 

"Please help our son. Like, we don't have a lot of choices." Trent Cantrell said. "Yeah, it's literally the only option. So that's why we're pushing so hard," Madison Cantrell said. 

SMARD 1 stands for Spinal Muscular Atrophy with respiratory distress.

"It's ALS for children. It's what they call it," Madison said.

The genetic condition slowly degenerates the spinal cord and muscles.

"Every second matters, literally with this type of disease," Madison said.

According to the National Organization for Rare Diseases, only 60 cases have been written about in scientific literature since 2015.

There's a clinical trial at Nationwide Children's in Columbus that the Cantrell's want to get into. 

"There's several doctors that are on with the clinical trial that we're reaching out to and trying. He's healthy like he's not far off from being a normal child like he's just got some breathing issues and like he can still be saved," Trent said.

The couple says the trial doesn't want a child that's already 4 months old but they aren't giving up. 

"This gene therapy could just halt the progression and he can live a normal happy life," Madison said.

So the Cantrell's are posting to social media and speaking up about their son's condition. 

"What we really need is support and push," Madison said.

They hope making some noise and rallying support could help them. 

"I'm going to fight for my little baby. Because I'm his voice or his voice." Madison said.

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