'Just a miracle:' Baby with rare genetic condition responds to experimental treatment

11-month-old Asher Cantrell was diagnosed with a rare disease in June of 2024 after visiting the hospital for what the family thought was a respiratory illness.

He was hospitalized for over a month before doctors diagnosed him with SMARD 1, which stands for Spinal Muscular Atrophy with Respiratory Distress. It slowly degenerates the spinal cord and muscles.

After Asher was diagnosed, the prognosis was not good. Doctors didn't expect him to live for very long. That's when parents Madison and Trent Cantrell learned about an experimental treatment being used in a study at Nationwide Hospital in Ohio. They asked the hospital to get into the study but were denied.

It wasn't until a non-profit, SmashSMARD, that advocates for SMARD1 contacted the hospital and offered to pay for treatment that things took a turn for the better. After that, Nationwide offered to give Asher the experimental gene therapy —without being part of the study. The hospital also received pressure from a social media campaign and emails/calls from the community.

Here's the timeline:

May 17th, 2024: Cantrells went to the hospital with Asher. Doctors initially believe he has pneumonia. He's admitted to the hospital.

June 21, 2024: Asher is diagnosed with SMARD 1. The Cantrells are told there are less than 100 cases around the world and the prognosis is grim. They are told there is no known cure but that there is an experimental treatment being studied at Nationwide Children's Hospital in Ohio by an organization that advocates for SMARD 1 called Smash SMARD. They are told they don't qualify for the study. News On 6 shares their story for the first time.

June 21-27, 2024: Family, friends and strangers rally around the family. Brittany Stineman, the founder of Smash SMARD contacts the hospital on behalf of the Cantrell family to push for treatment. People share and post about Asher on social media and reach out to the Hospital. News On 6 contacts the hospital about his case. 

June 27, 2024: Nationwide Children's contacts News On 6 to tell us the Cantrells have been approved for the drug and are sending it to St. Francis Children's thanks to the public push and pressure from non-profit Smash SMARD.

July 2, 2024: The treatment is approved by the FDA and Asher receives it soon after.

July 3, 2024: News On 6 shares their story about the approval.

July 3-31, 2024: Asher receives gene therapy and is monitored by doctors before being released from the hospital on the last day of the month.

Since the treatment in July, Asher can cough, hiccup, say words, use his arms and legs, and can sit upright. These are all things that doctors weren't sure he'd ever be able to do. They say his body accepted the gene and is responding well. The Cantrell family hopes he will be able to get off the ventilator soon. 

Learn more about SMARD1 and how to help those with it.