5yo NY girl’s terminal diagnosis can save her brother, but insurance is now the family’s biggest hurdle

The Catch-22 of the American healthcare system is that it’s home to some of the world’s most advanced medical treatments, yet many of them remain financially out of reach for the people who need them most. New York couple Millie Grennan and Joe Somers have endured one heartbreaking setback after another. Just when they thought they had found a glimmer of hope, they discovered it might still be beyond their reach.

Their 5-year-old daughter, Anna Somers, was recently diagnosed with a rare genetic disorder called Metachromatic Leukodystrophy (MLD). The progressive neurometabolic disease gradually destroys the protective sheath surrounding nerves in the brain and spinal cord. Once symptoms begin, there is currently no way to reverse the damage, meaning Anna’s condition is expected to be terminal.

The lights were on and nobody was home

The family first noticed something was wrong during the summer of 2025 at their home in Long Beach. Anna became noticeably less social and would often stare into the distance without speaking. Joe Somers recalled to People, “It was like the lights were on and nobody was home.”

When Anna began struggling to keep her balance on the playground, her parents knew it was time to seek medical help. After months of testing, they received the devastating diagnosis in December 2025. Doctors explained that MLD would gradually rob Anna of her ability to walk, speak, swallow, feel sensation in her hands and feet, and eventually cause seizures and hearing loss.

Since then, Anna has already lost the ability to speak, and doctors have warned her parents that she may lose the ability to walk within the coming months.

Because MLD is an inherited disorder, doctors also recommended testing the couple’s younger son, 2-year-old Joey. This time, knowing exactly what they were looking for, they were able to reach a diagnosis within weeks. Joey also carries the disease.

Unlike Anna, however, Joey was diagnosed before symptoms appeared.

That timing could make all the difference.

The FDA has approved a groundbreaking one-time gene therapy called atidarsagene autotemcel, which uses a patient’s own blood stem cells that have been genetically modified with a harmless virus to correct the defective gene before the disease takes hold.

The catch is its price tag: roughly $4 million.

Joey is expected to begin treatment next month, but the family says navigating insurance coverage has been an uphill battle from the beginning. They have since launched a GoFundMe to help cover the enormous costs associated with his care.

Dr. Laura Adang, a neurologist at Children’s Hospital of Philadelphia, summed up the family’s situation, saying, “Unfortunately, the story of Anna and Joey is one that we have seen over and over again.”

Should medical breakthroughs be accessible?

In many ways, everything worked exactly as modern medicine hopes it will. The parents recognized the warning signs. Doctors identified the genetic cause. Researchers had already developed a treatment capable of changing the younger child’s future.

The remaining obstacle isn’t scientific — it’s financial. When a life-saving therapy exists but carries a multimillion-dollar price tag, it inevitably raises a difficult question: how accessible is a medical breakthrough if the people who need it most can’t realistically afford it?