“When Taylor was 6 weeks old, the doctor said that he may have cataracts. We were referred onto our local hospital but were quickly told that he had more complexities than first thought. Taylor was just 10 weeks old when he had his first procedure, which was followed by another at 11 weeks. It was at that point, we discovered that he was completely blind.
A year and a half later, Taylor was diagnosed with Norrie Disease. While it was a small relief to know the reason for his blindness, when your child is faced with a disability that will affect him for the rest of his life, it’s extremely hard to manage. I wanted to know what his future would hold and what sort of life he could expect, but online information was limited. They mentioned the blindness and later a high chance of hearing loss. Because Norrie disease is so rare, it’s been difficult to find people with expertise in the condition, or any hope for future treatment.
Taylor would always say that if he lost his hearing it would be disastrous, as he relies on it completely. It’s caused him a lot of anxiety growing up. But sadly, his hearing has deteriorated, and he now has to wear a hearing aid. It is a scary time for us all.”
Taylor faces a lot of difficulties compared to the average child. His family have to fight hard to make the best opportunities for him. “If, thanks to Sparks funding, the research team can develop treatments to save the rest of Taylor’s hearing and help other children, that would be amazing”