NEED TO KNOW
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Five-year-old Anna Somers was diagnosed with a rare genetic disorder called MLD, leading to a quick decline in her motor and cognitive skills.
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This diagnosis prompted doctors to test her younger brother, Joey, who is two, and they discovered he also has the same condition, but he is still at a stage where treatment is possible.
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The family is trying to cope with Anna’s rapid decline while preparing Joey for an expensive $4 million gene therapy that may save his life.
It’s heartbreaking to think that a little girl’s terminal diagnosis might open a door to save her brother.
Last summer, in 2025, Millie Grennan and Joe Somers from Long Beach, New York, noticed some troubling changes in their daughter Anna. Normally full of energy and social, the 5-year-old had become distracted and seemed to drift off into her own world.
“It felt like the lights were on, but nobody was home,” Somers shared.
After observing Anna struggling with her balance—frequently tripping on the playground—they made the decision to consult a physician.
By December, the diagnosis came: metachromatic leukodystrophy (MLD), a rare genetic illness that results in a gradual loss of physical and mental capabilities, as noted by medical sources. It’s often likened to a form of dementia that primarily affects children. Symptoms range from losing the ability to walk and speak, to severe sensory and cognitive impairments.
Unfortunately, there is no cure for MLD, and it usually leads to death within 10 to 20 years post-diagnosis. However, if identified early, it can sometimes be addressed with a recently approved gene therapy, assuming the patient shows few or no symptoms.
In Anna’s case, the illness has progressed rapidly, robbing her of speech. Doctors predict she could lose the ability to walk in just months and might need a feeding tube.
Since MLD is hereditary, the doctors suggested testing for Joey, Anna’s younger brother. They discovered shortly after Anna’s diagnosis that he, too, has the condition.
Since Joey’s diagnosis in January 2026, the family has been in a race against time to secure treatment before any symptoms manifest. The therapy costs over $4 million, and although navigating insurance has been a struggle, medical professionals believe it could save Joey’s life. Plans are in place for him to start the treatment next month.
Meanwhile, Anna’s health continues to decline. Grennan mentioned the bittersweet reality of knowing that Anna’s dire situation led to Joey’s condition being caught early enough for intervention.
“It’s hard to feel happy,” Grennan reflected. “You are saving one child, but at the same time, you’re losing another. It’s like she’s sacrificing herself to ensure her brother’s survival.”
Dr. Laura Adang, a neurologist at Children’s Hospital of Philadelphia, commented that due to the rarity of MLD, testing typically occurs only after the first child shows significant decline.
“Sadly, we’ve heard similar stories countless times,” Dr. Adang noted.
For now, Grennan and Somers are striving to make Anna’s life as fulfilling as possible. Although she struggles with her inability to communicate like she used to, they mention that she still enjoys spending time with Joey.
“They share a special bond,” Grennan said. “Anna adores her brother more than anything.”
“It’s all happening so quickly,” Somers observed. “One day she might wake up and can’t walk, or worse—blindness could happen overnight. Each day she remains stable is a blessing.”
