5-Year-Old's Diagnosis Saves Baby Brother's Life

A devastating diagnosis for one child became a lifesaving discovery for another in Long Beach, New York.

When 5-year-old Anna Somers started staring off into space and losing her balance last summer, her parents Millie Grennan and Joe Somers knew something was wrong. Their typically social daughter seemed distant, wandering aimlessly at the playground.

Doctors diagnosed Anna with metachromatic leukodystrophy (MLD) in December, a rare genetic condition that progressively destroys motor and cognitive abilities. The disease moves fast, causing children to lose the ability to walk, talk, and swallow.

Anna has already lost her ability to speak. Within months, doctors expect she'll need a wheelchair and feeding tube.

But Anna's diagnosis triggered an urgent question: Did her 2-year-old brother Joey have the same genetic condition? Testing in January revealed he did, but with one critical difference.

Joey showed no symptoms yet. That meant he qualified for a newly approved gene therapy that can stop MLD before it starts destroying the brain and nervous system.

The treatment costs over $4 million, and the family faced insurance battles, but Joey is scheduled to begin therapy next month. Doctors believe it will save his life.

Sunny's Take

The bittersweet reality weighs heavily on Grennan and Somers. "You can't be happy because you're saving your baby, but you're losing your baby, too," Grennan told Newsday.

Dr. Laura Adang from Children's Hospital of Philadelphia says this heartbreaking pattern repeats with MLD families. Because the disease is so rare, doctors typically only test siblings after one child shows symptoms.

Anna and Joey remain inseparable despite her declining condition. "Anna is absolutely obsessed with Joey," Grennan said. "She loves him more than anything."

The parents are giving Anna the most normal life possible while preparing for rapid changes ahead. "One day she's going to wake up and not be able to walk, or she could wake up blind," Somers said. "So every day that she's not like that is good."

Anna's legacy will live on through Joey, a little boy who got the chance to grow up because his big sister's struggle illuminated the path forward.