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 You've probably found medical literature highlighting severe cases, outdated statistics claiming fewer than 60 cases worldwide, and very little information written for families.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. Medical literature tends to feature the most severe cases because those are the ones most likely to be studied and published. Many 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 60 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. Vision issues are common, but with early intervention - contact lenses, vision therapy, regular monitoring - many children do remarkably well. 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 and terrifying this diagnosis feels. We're here to connect you with other families who understand, provide accurate information, and support you every step of the way.