A mom’s prayers and relentless fight have finally paid off.
Chicago-based brothers Noah (aged 9) and Hunter (aged 10) have been battling a rare genetic disorder known as Duchenne Muscular Dystrophy. The major indications of this disease include weakening all body muscles, including those of the heart, which shortens life expectancy to just 30-40 years.
After much struggle, their parents got Noah treated at Blue Cross Blue Shield Hospital in the city last November, where a life-changing gene therapy saved his life. Ever since, Noah has been thriving with good health.
Unfortunately, when it was Hunter’s turn, the parents were disappointed after the health insurance company denied covering his medical expenses for the same genetic procedure. Sharing their struggle with The Independent, Alison Joseph and William Small said they even pleaded with several local and state representatives in hopes of reversing the insurance company’s decision.
Noah (the brother who received #elevidys (@sarepta)) has written a letter to @fepblue @BCBSAssociation for his brother Hunter to receive the same treatment he received for #dmd pic.twitter.com/fG4g0HwDOB
— William M. Small (@RagnrDaneskjold) September 4, 2025
And now, nearly weeks after this news broke, it seems Alison and William finally got their sigh of relief, as in a major development the insurance company has decided to withdraw their rejection of the case. Speaking with the media outlet, Noah and Hunter’s mother said “It’s just such a sense of relief after I got the phone call Monday. We’re so grateful for all the outreach and coverage… it was a lot of effort that [meant] we were able to get this done.”
For the unversed, the medical application for Hunter’s gene therapy treatment, worth $3.2 million, was rejected after the health insurers tagged it as a procedure ‘not medically necessary’. On the other hand, Alison and William were shocked by how the company did not take note of Noah’s progress after going through the procedure before. At the same time, Hunter continued to be plagued by the genetic disorder.
Most recent article detailing our fight for approval of Elevidys (@sarepta) for our son with DMD by @rhianlubin at the @Independent https://t.co/oC7uJna6G9
— William M. Small (@RagnrDaneskjold) September 7, 2025
The most heartbreaking part came when the parents revealed they hadn’t shared any details about the delayed surgery with Hunter himself, as they continued to fight at different levels of the jurisdiction to get the former a corrective gene treatment.
Opening up about Hunter’s excitement at finally being treated for the disorder he’s carried for so long, Alison said, “When he got home from school on Monday, we told him, and he’s excited. He’s obviously a little bit nervous…but he’s excited. Then on Tuesday morning before school, he said, ‘Mom, I just feel really happy.’ I asked him, why do you feel so happy? He’s like, ‘because I can get gene therapy now.”
Well, as Noah and Hunter are all set to embark on a new life ahead with good health and well-being, one can only hope that they remain in the pink of their health no matter what. This corrective gene therapy is not yet the final solution to the problem, but it helps DMD patients improve their locomotive and motor skills. It involves a one-time transfusion, and so far, only about 900 people from across the globe have taken up this treatment.
