Oklahoma— A local couple’s tireless fight for their four-month-old baby, Asher, diagnosed with a rare and devastating muscular disease, has led to a breakthrough. Thanks to their persistence and community support, Asher is set to receive a potentially life-saving treatment.

Madison and Trent Cantrell’s love for their son is immeasurable. When Asher was just three months old, Madison noticed something was wrong. Initially misdiagnosed with pneumonia, Asher underwent a month of testing before doctors identified his condition as Spinal Muscular Atrophy with Respiratory Distress (SMARD).

SMARD is a severe type of spinal muscular atrophy that prevents Asher from breathing on his own and will likely cause him to lose movement as the disease progresses. According to the National Organization of Rare Disorders, most children with SMARD do not survive beyond their first year.

“The first thing we talked about that we’re having a hard time processing is you have to watch your child degenerate. 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.

Desperate for help, the Cantrells learned of clinical trials at Nationwide Children’s Hospital in Ohio but were initially rejected because Asher did not meet the criteria.

“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.

Refusing to give up, Madison and Trent began contacting doctors, sending letters, and launching a social media campaign to gain support for Asher. Their plea for help resonated with the community and caught the attention of Nationwide Children’s Hospital.

While the hospital could not comment on the specifics of Asher’s case, they issued a statement: “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.”

In a turn of events, Nationwide Children’s Hospital agreed to donate the gene therapy treatment to Asher for free, even though he did not qualify for their clinical trial. This decision has given the Cantrells renewed hope.

“We still have hope that maybe one day he can overcome the ventilator, one day he can walk, one day he can, and that’s all a reality now,” said Trent.

Madison shared her relief and gratitude, “I would even pass this hospital, and I would say, you know, oh my god, that’d be awful. To have a child in there, you know, and then hearing, I’m like, living here almost two months. So, just like a totally new perspective on life.”

The family’s story, first aired by News On 6, prompted an outpouring of support from the community. Social media campaigns and dedicated doctors at St. Francis worked tirelessly to secure the potentially life-saving treatment for Asher.

“They’re injecting the gene, the correct gene, that hopefully his body responds. It’s a lot of like, you know, keeping a close eye on him for a couple of days or weeks,” said Madison.

While the treatment is still in its early stages, it represents Asher’s only chance for improvement. The Cantrells are now filled with gratitude and optimism.

“They’re giving this to us for free,” Madison said. “Like here you go, you know, so nationwide. Thank you, my gosh.”

If all goes well, the family hopes to bring Asher home from the hospital by the end of July.

Source:
https://www.fox23.com/news/local-parents-fighting-to-get-4-month-olds-rare-muscular-disease-treatment/article_8d30a87a-34a9-11ef-a2e2-8f27cb5f78f2.html
https://www.newson6.com/story/66861dd678e77fa3ad03c8d3/4-month-old-child-to-receive-gene-therapy-treatment-for-rare-disorder
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