Tessa Evans’ Rare Condition: Turning Struggles into Motivation for Change

Tessa’s rare diagnosis, Bosma arhinia microphthalmia syndrome, meant her first battle was simply to breathe. A tracheostomy at two weeks kept her alive, but could not quiet the grief of parents mourning the future they had imagined. Grainne and Nathan faced whispers, stares, and the quiet suggestion that maybe it was kinder not to intervene. Instead, they chose radical visibility and relentless hope, refusing to let their daughter be hidden or pitied.