For Alison Joseph, watching her 9-year-old son Noah splashing around in the swimming pool this summer for the first time was bittersweet.<\/p>\n
Overjoyed that Noah had learned to swim, the mom was simultaneously reminded that her other son, 10-year-old Hunter, couldn\u2019t join in. <\/p>\n
\u201cHunter sees his younger brother and how well he’s doing,\u201d Alison told The Independent. \u201cAnd I think there is some sadness that he wants to be able to play outside longer, and do all the things that his brother is now finding so much easier.\u201d<\/p>\n
Noah and Hunter both have Duchenne muscular dystrophy (DND), the most severe form of the genetic disorder. The disease causes muscle degeneration and weakness due to a mutation in the gene that produces dystrophin, a protein that protects muscle fibers from breaking down.<\/p>\n
The disease, which mostly affects boys, gets worse over time. It makes it difficult to walk, run, jump, and play, with children often delayed in reaching milestones like crawling, walking and talking. The boys will likely use wheelchairs when they are teenagers, and life expectancy ranges between 30 and 40 years old.<\/p>\n
![\"Hunter,](\"https:\/\/www.europesays.com\/uk\/wp-content\/uploads\/2025\/09\/IMG_2079.jpeg\")
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Hunter, 10, (left) and brother Noah, 9, (right) were diagnosed with Duchenne muscular dystrophy in 2017. Noah received pioneering gene therapy in March this year, which has significantly helped his mobility, his parents said. But Hunter\u2019s insurance claim for the same treatment was denied. (Alison Joseph)<\/p>\n
In March, Noah received pioneering gene therapy <\/a>to improve his mobility and quality of life through Alison\u2019s health insurance plan<\/a>. But when Hunter\u2019s application was submitted in late May, authorization for exactly the same treatment was denied. <\/p>\n \u201cThe reason on our denial letters is that it’s not medically necessary,\u201d the mom-of-three said from her home in Winnetka, just outside Chicago. \u201cIt was very blindsiding. They didn’t ever deny my other son, it was approved the first go. So I was very taken aback.\u201d<\/p>\n Alison, a physician, and her husband William, who works in finance, are now grappling with how to move forward following the decision from health insurance giant, Blue Cross Blue Shield. They say they have been put in an impossible and \u201cheartbreaking\u201d situation.<\/p>\n The Independent contacted Blue Cross Blue Shield for comment, and asked why the treatment was only covered for Noah when both boys have the same disease. The Independent also asked the company whether it would reconsider the denial in Hunter\u2019s case and to respond to accusations that the decision was \u201cunfair.\u201d<\/p>\n \u201cTo protect our member\u2019s privacy, we do not publicly discuss individual cases,\u201d a Blue Cross Blue Shield spokesperson said. \u201cWe do want our members to know that medical experts, including doctors, are involved in reviews to ensure the treatments and services our members receive are evidence-based and not duplicative. Decisions are guided by nationwide best practices for care, helping to identify what has proven successful for members in the past.\u201d<\/p>\n With every passing day, Hunter\u2019s condition gets worse. <\/p>\n \u201cHis muscle is wasting away every day,\u201d Alison, 44, said. \u201cHe’s going to be in a wheelchair in the next few years and it just doesn’t seem right that they are not going to allow him to get this treatment. They’re wasting his time. And it\u2019s just not fair.\u201d<\/p>\n The brothers were diagnosed with DND in 2017 after tests showed Hunter had elevated liver enzymes, which is indicative of the condition. Three months later, when further tests showed the levels had not returned to normal, a specialist delivered the devastating diagnosis. <\/p>\n DND is a genetic disorder and so Noah and 12-year-old brother Carter were tested following Hunter\u2019s diagnosis. Carter did not have the disease, but Noah\u2019s results came back positive. It was a triple blow for Alison, who not only had to process the fact that two of her children had the life-limiting illness but that she was a carrier of the disease.<\/p>\n The parents and their eldest son Carter have had to go through the pain of witnessing Hunter and Noah gradually decline over the years, as DND has no cure.<\/p>\n But in 2023, there was a glimmer of hope when the gene therapy, Elevidys<\/a>, manufactured by Sarepta Therapeutics, received accelerated approval from the U.S. Food and Drug Administration.<\/p>\n open image in gallery<\/p>\n Alison and husband William, pictured with their boys Hunter, Noah and Carter. Both of the younger boys were diagnosed with Duchenne muscular dystrophy in 2017, which has no cure (Alison Joseph)<\/p>\n The new treatment, which comes with a $3.2 million price tag, helps improve muscle function and motor skills. So far, over 900 patients have had the treatment, the company says, but given how novel the medicine is, critics say there is limited evidence that the benefits of the treatment outweigh the risks.<\/p>\n But doctors are cautiously optimistic.<\/p>\n \u201cAll these newer gene transfer therapies are opening doors for these boys to possibly live longer and lead a good quality of life,\u201d said Dr Aravindhan Veerapandiyan of Arkansas Children\u2019s Hospital. \u201cIt\u2019s changing the trajectory of the disease, changing the trajectory of their lives, improving the quality of life for the boys and their families.\u201d<\/p>\n Elevidys is not without controversy. It was approved by the FDA in 2023 but limited to children between 4 and 5 years old, who are able to walk. In 2024, the treatment was expanded to include patients 4 years and older.<\/p>\n But Public Citizen, a nonprofit which acts an ethics watchdog for clinical trials, said the FDA approval was \u201cill-advised\u201d<\/a> because it was \u201cnot supported by favorable FDA scientific reviews\u201d. Nor did clinical trials demonstrate that children with the disease \u201cmaintained or regained gross motor abilities\u201d, the group added.<\/p>\n There was heightened concern in July when the FDA told Sarepta to suspend distribution of the drug while the agency investigated the death of an 8-year-old boy. The FDA subsequently concluded the death was \u201cunrelated to the gene therapy product itself\u201d but the agency has still recommended the company pause<\/a> distribution of the drug in patients who cannot walk. However, this doesn\u2019t apply to Noah or Hunter, who can both still walk and play with their older brother, Carter.<\/p>\n For Alison and William, Elevidys was worth trying. \u201cWe had very serious conversations with our doctors, but we also know the natural progression of the disease,\u201d Alison said. \u201cSo we were willing to take that risk.\u201d<\/p>\n![\"Alison](\"https:\/\/www.europesays.com\/uk\/wp-content\/uploads\/2025\/09\/IMG_4651.jpeg\")
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