In 2002, I gave birth to a beautiful baby girl—Leah Marie Crone. My pregnancy had been smooth, without complications, but Leah’s arrival marked the beginning of a very different journey. She was born with Baller-Gerold syndrome, an extremely rare condition with only 20–40 known cases worldwide. Her skull lacked a soft spot, leaving no room for brain growth. Imaging showed there would be no development of white matter, so surgery wasn’t an option.

Leah faced many challenges from the start: a high palate, no gag reflex, and the need for a g-tube to feed. Doctors at UCLA gently prepared me for the possibility that she might not survive her first year.

Miraculously, Leah came home for a few precious months before experiencing multiple seizures that led to her being readmitted to the hospital—never to return home again. Before her first birthday, she gained residency at a nursing home, where she would live the rest of her life.

Despite her medical complexities, Leah thrived in her own way. She attended a specialized school that nurtured her needs and graduated through high school. She was happy, stable, and deeply loved. Her smile lit up the room, and she would beam with joy when I kissed her or spoke to her. Over time, those reactions slowed, but her spirit remained.

This past year, however, her health began to decline. Recurrent pneumonia and low blood pressure led to multiple ICU stays. Her kidneys weakened, her g-tube began to fail, and the stability she once knew was no longer possible. When I saw her, I could feel it—her body was tired. She had fought bravely for 23 years.