This Nystagmus Awareness Day we’re asking you to share your story.
You can share your nystagmus story here
This is Sue’s story …
My nystagmus story begins in 1991 when the daughter I’d always dreamt of having was born. She was perfect.
Just imagine the shock when, 6 weeks later at baby clinic, a doctor virtually leaped across the table at me and told me my perfect baby girl was blind.
She wasn’t blind, of course, but I knew there was something wrong with her eyes.
So, I went to my GP for more information. I came away with a compliment slip bearing just one word – ‘nystagmus’ – and an urgent referral to the eye hospital.
That was the longest two weeks of my life. There was no internet in 1991, so I couldn’t even google it.
At the eye hospital the diagnosis of nystagmus was confirmed and the stark pronouncement that she would never drive.
But I was more interested in the first 17 years. Would she learn to read and write, go to mainstream school, make friends?
And later, would she go to university, have a successful career? Would she find love and get married?
Luckily, I was also handed a leaflet about the Nystagmus Network, a national charity founded by a Mum just like me.
The call I made that evening to the support line literally changed my life. Over the years the Nystagmus Network has helped me learn about my daughter’s condition, how to support her and guide her through school, university, into employment and help her lead her best life.
I can tell you now that my daughter has achieved all the things I hoped she would and so much more. If only I’d known back then, maybe I wouldn’t have worried so much.
There have been so many proud parent moments, not least her wedding day earlier this year. It’s true she’ll never drive, but my son-in-law assures me that she’s an excellent navigator.
That little girl I worried might never learn to read now has a degree in philosophy and a career in communications.
She’s taught me so much about life and love and, thanks to her, I’m enjoying a late, second career, working in an organisation where I can help parents just like me and make a difference for people with nystagmus like her.
My daughter and I are still learning about nystagmus together and I’m so pleased to be able to share our story with you.
But when I’m with her, to misquote Snow Patrol, “all that I am, all that I ever was is there in her perfect eyes. They’re all I can see.”
