Leo

When our son Leo was diagnosed with Nance-Horan Syndrome at 23 weeks gestation, we turned to the internet, desperate for answers. What we found were scattered academic papers highlighting severe cases, a handful of outdated resources, and an overwhelming sense of isolation. The medical literature suggested there were fewer than 60 cases worldwide—yet within a year of starting a Facebook support group, we connected with over 60 families facing the same journey.

That gap between what we were told and what we discovered revealed a truth: Nance-Horan Syndrome isn't as rare as reported—it's underdiagnosed, under-researched, and misunderstood. Families were out there, but they were alone, scared, and without the resources they desperately needed.

Leo faces every new experience with absolute joy and positivity. He is brave, curious, resilient, and tenacious. He loves to explore, make people laugh, dance, and make new friends. But his path requires weekly therapy sessions (PT, OT, and vision therapy), specialized contact lenses that cost hundreds of dollars and are easily lost, regular monitoring for glaucoma, and constant advocacy to ensure he gets the support he needs.

We founded Leo's Light because no family should have to search as hard as we did to find hope. We created this foundation to transform isolation into community, fear into knowledge, and uncertainty into action—so that every child with Nance-Horan Syndrome can thrive with the same joy and determination that Leo shows us every day.