A Long Beach family is facing an unimaginable dual tragedy as their eldest daughter battles metachromatic leukodystrophy (MLD), a rare genetic condition likened to childhood dementia, while simultaneously preparing to save the life of her younger brother, who has been diagnosed with the same disease.
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Millie Grennan and Joe Somers first became concerned about their five-year-old daughter Anna in the summer of 2025 when they noticed significant changes in her behaviour. Once an exuberant child, Anna appeared increasingly disengaged, often lost in thought or wandering without purpose. Her parents initially attributed these symptoms to normal childhood quirks until Anna began experiencing difficulties with balance, culminating in numerous falls at the playground.
After consulting a doctor, the family’s fears were confirmed in December 2025 when Anna received her devastating diagnosis of MLD. This progressive disorder leads to a rapid decline in both motor and cognitive abilities and is characterised by symptoms such as loss of mobility, speech, and sensory functions, along with seizures and paralysis. With no known cure, the prognosis is grim, typically resulting in death within 10 to 20 years of diagnosis.
Doctors informed the family that early detection can lead to treatment through an innovative gene therapy recently approved in the United States, but it is only effective if symptoms are minimal or absent. Sadly, Anna’s condition has rapidly advanced, and she has since lost her ability to speak, prompting fears that she may soon require assistance even in basic activities like walking and eating.
In a harrowing twist, genetic testing revealed that Anna’s two-year-old brother, Joey, also has MLD. Following his diagnosis in January 2026, the family has been working tirelessly to secure treatment for Joey before his own symptoms begin to manifest. Unfortunately, the gene therapy required is prohibitively expensive, costing upwards of £4 million, and has also posed insurance challenges for the family. However, doctors remain optimistic that this intervention could be life-saving for Joey, who is slated to begin treatment next month.
The contrast in the family’s circumstances is stark. While they strive to ensure Joey receives the care he needs, Anna’s deteriorating health serves as a painful reminder of the fragility of life. Millie Grennan expressed the complexity of their emotions, saying, “You can’t be happy because you’re saving your baby, but you’re losing your baby too. It’s like sacrificing herself to save her little brother.”
Dr Laura Adang, a neurologist at the Children’s Hospital of Philadelphia, commented on the rarity of MLD and the unfortunate trend of diagnosing the condition only after symptoms emerge in one child. “Unfortunately, the story of Anna and Joey is one that we have seen over and over again,” she stated.
As the family grapples with these challenges, they are committed to maintaining as normal a life as possible for Anna. Despite her frustrations with communication, she finds joy in her bond with Joey, who she adores. “Anna is absolutely obsessed with Joey. She loves him more than anything,” her mother said, highlighting their deep sibling connection.
Time is of the essence for the Grennan family, as they navigate this emotional journey. “It’s just happening so fast,” Joe Somers remarked, reflecting on the potential for Anna’s condition to deteriorate drastically at any moment. “One day she’s going to wake up, she’s not going to be able to walk, or she could wake up and find she’s blind. So just preparing for the worst. But every day that she’s not like that is good.”
The family’s resilience is evident as they face the heartbreak of Anna’s diagnosis whilst fiercely advocating for Joey’s treatment. With their hopes resting on timely medical intervention, they remain a testament to a powerful, if heartrending, family bond that endures in the face of tragedy.