Rare Disease, Vision Loss & Raising a Daughter With the Same Diagnosis

For The Hayters: The Stories We Survive · Oct 18, 2026 · 1h 4m

Trigger warnings: abortion, miscarriage, NICU and infant medical emergency, pediatric surgery, chronic pain, vision loss, panic attacks and alcohol use, parental infidelity and anger, family estrangement.

Bree was born visually impaired. By the time she was five, she'd had six or seven eye surgeries. For twenty-two years, nobody could explain why her body worked the way it did: the cataracts, the glaucoma, the hole in her heart, the dental problems dentists had never seen before, and the daily pain she assumed everyone had.

At 22, genetic testing finally gave her a name for it…