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Sister's Illness Sparks Brother's Lifesaving Gene Therapy
4 Jul
Summary
- Anna's terminal MLD diagnosis led to testing her brother, Joey.
- Joey, 2, will receive a $4 million gene therapy treatment.
- Anna's condition deteriorated, enabling early intervention for Joey.
In the summer of 2025, parents Millie Grennan and Joe Somers of Long Beach, N.Y., observed concerning changes in their daughter Anna. By December, the 5-year-old was diagnosed with metachromatic leukodystrophy (MLD), a rare genetic disorder causing progressive loss of motor and cognitive functions.
MLD has no cure, but early-stage cases can be treated with gene therapy approved in early 2024. Anna's condition advanced rapidly, leading to a loss of speech and anticipated decline in mobility and need for a feeding tube.
Testing revealed her 2-year-old brother, Joey, also has MLD. As of January 2026, his parents have been seeking the $4 million gene therapy to save his life before symptoms appear. He is scheduled to begin treatment next month, a stark contrast to Anna's deteriorating health.
Grennan and Somers are navigating the emotional complexity of saving one child while losing another. They are striving to provide Anna with a normal life, cherishing her bond with Joey.
