Ava was born with congenital nystagmus. She loves rugby and swimming. She’s full of life and lets nothing get in her way.
Cohen’s Story
“Cohen was diagnosed with congenital nystagmus when he was around 6 months old. He is now almost 10 years old. Cohen’s cousin was diagnosed with nystagmus a year or so before him. This gave us much reassurance that Cohen will be ok. We’ve been so lucky. Cohen has had the same visual impairment teacher since nursery. She makes sure all the right settings are in place for him in school and helped him be entitled to extra help outside of school. I’m forever grateful for his VI teacher. He has a lovely group of friends in school and every school report is about him growing in confidence which is so nice to hear. He enjoys football, Xbox, swimming. He constantly makes us proud and never lets his visual impairment hold him back.”
Sue’s 1984 Story
In 1984 I had never heard of nystagmus and had no connection with the condition at all.
It was for me a very momentous year, though, because it was the year I met the man who was to become my husband.
We were both studying Travel and Tourism and became firm friends, helping each other prepare for our British Airways fares and ticketing qualifications.
We married in 1987 and then in 1991 heard the word nystagmus for the very first time when our second child was born, our daughter.
Soon afterwards we were introduced to the Nystagmus Network and have stayed connected with the charity ever since. After serving as a volunteer Parent Adviser and Trustee I became a member of the staff team in 2015.
You can watch a short video here about the story of my daughter’s diagnosis, my very first encounter with the Nystagmus Network and what happened after that.
Onyeka’s 1984 Story
This is a photo of my elder brother (Tony) and me at my first birthday celebration in Nigeria. Report has it that he desperately tried to steal the show but I didn’t let him.🙂Can you spot my dad’s analogue radio? Growing up, I never heard the word nystagmus, although I had a few friends with albinism. I only became aware of nystagmus, in the early 2000s, while studying Optometry at the University of Benin.