How did your son’s diagnosis come about?
“When Enzo was born, he had clubfoot. So initially he was treated for that, which included seeing a physiotherapist. She did exercises with Enzo, but whenever she would move a toy in front of Enzo’s face, she noticed that his eyes wouldn’t follow. That was the first inkling that started the search for a vision pathology. First, we visited a pediatrician, then a pediatric ophthalmologist and then a neurologist. He was around four or five months old when they made an electroretinogram, or ERG. It showed that there was no signal coming through from his eyes. The results from a genetic test took nine months. When he was around 18 months old, we knew the cause was his CEP290 protein and he had LCA10.”