Local parents fighting to get 4-month-old's rare muscular disease treatment

TULSA, Okla. — A local couple is fighting to get their four-month-old baby treatment for his rare muscular disease. They’ve been rejected from the only hospital they know can help.

“Finally that Thursday it kinda hit me, 'oh my god I could watch him die',” said Madison Cantrell.

Madison and Trent Cantrell love their four-month-old son, Asher, more than anything. But at just three-months-old, Madison noticed something was wrong.

They took Asher to the hospital where they were told it was probably Pneumonia. After a month of testing they got a diagnosis.

“And they said okay, he has SMARD,” said Madison.

SMARD is type of spinal muscular atrophy with respiratory distress. Little Asher cannot breathe on his own anymore because of it. He likely wont have any movement as the disease progresses. There’s no treatment or cure. Most kids with SMARD die within a year, according to the National Organization of Rare Disorders.

“The first thing we talked about that we’re having a hard time processing is you have to watch your child degenerate and we’re faithful people. We believe in Jesus and God right now. My wife asked me last night 'what’s our hope,' and we both decided we have to plant our roots in faith and do everything we can. We’ve kind of reached that point where we’re desperate,” said Trent Cantrell.

Nationwide Children’s Hospital in Ohio is doing clinical trials on kids with SMARD. But Trent says they've rejected Asher so far.

“Since the day we found out about his diagnosis, they told us no because he didn’t fit the criteria, is what we were told,” said Trent.

Madison and Trent are not done fighting.

They’re doing everything they can, contacting doctors, sending letters and starting a social media campaign to get Asher into that trial. They’re asking for the community to get involved.

“If there’s something you can do praying, sharing our social media. We just ask that you have that compassion and help us out any way you can,” said Trent.

You can see the Cantrell's Facebook post by clicking here .

You can learn more about SMARD by clicking here .

After our story aired, the Nationwide Children's Hospital sent the following statement:

"While we can’t comment on this particular patient and family, we have had ongoing communication with clinicians at The Children’s Hospital at St. Francis and have offered to donate this investigational drug free of charge, pending regulatory approval. Our hearts are with every family dealing with these difficult diagnoses."