On New Year’s Eve 1984 my parents went on their first date. And I guess that’s where my nystagmus story begins.
My Dad had Nystagmus from birth but it wasn’t until 1992, when I was also diagnosed, that he heard about the Nystagmus Network and learned more about our shared visual impairment.
Unlike many people, I was in the fortunate position growing up of always knowing someone else with Nystagmus, and my Dad was a brilliant role model for not letting his Nystagmus hold him back!
We attended many Nystagmus Network open days together over the years and always enjoyed meeting others with Nystagmus and hearing about their experiences. I’m a bit of a geek and love hearing about the science and research side of things too! Dad (Richard Wilson OBE) took his involvement with NN to the next level by becoming a trustee and then Chairman of the charity. Sadly Dad passed away last year but I’m sure he wouldn’t mind me sharing our story.
This year the next chapter in my story began when my 5 month old son was also diagnosed with Nystagmus. We won’t really know how much it will affect him until he’s a bit older but I am ready to be his biggest cheerleader and learn more about Nystagmus as a parent. In some ways it’s a nice link back to Dad and my son will grow up hearing lots of stories of his Grandad, who also had wobbly eyes just like him and Mummy.
