Welcome to Leo’s Light
The Nance-Horan Syndrome Foundation
Help us light the way forward.
Why Leo’s Light Exists
When our son Leo was diagnosed with Nance-Horan Syndrome, at 23 weeks gestation, we couldn't find the support we desperately needed. Within a year, we connected 80+ families facing the same isolation. Leo's Light exists to ensure no family navigates this diagnosis alone. We provide education and a community that understands.
What Families Need to Know
If you've just received an NHS diagnosis, you're likely feeling overwhelmed and scared. You've probably found medical literature highlighting severe cases, outdated statistics claiming fewer than 60 cases worldwide, and very little information written for families.
Here's what we want you to know:
The information you're finding online isn't the full picture. The cases you're reading about are usually the most severe ones — they're just what tends to get studied. Children with NHS live full, joyful lives with appropriate support and early intervention.
NHS is more common than reported. Within just one year of starting our support group, we connected with over 80 families — proving this condition is significantly underdiagnosed and underreported. You are not as alone as you feel right now.
Every child with NHS is different. Some children have mild symptoms; others face more significant challenges. While bilateral congenital cataracts are a core feature, many children do remarkably well with early intervention — contact lenses, therapies, regular monitoring. Developmental delays, when present, can often be addressed through therapy.
There is hope, community, and support. Leo's Light exists because we know how isolating this diagnosis can feel. We're here to connect families with others who understand, provide accurate information, and support children and their families from diagnosis and beyond.