Thank you to everyone sharing their stories with us for Nystagmus Awareness Day 2023.
You can share your story here
This is Claudia’s story …
Ours isn’t a complete journey, far from it. In fact, it’s just the beginning. Claudia is 6.
Claudia was diagnosed at 9 months old.
I’d noticed the flicker in her eyes.
Is this developmental? I’m not sure I remember her brother having the same issue, but it was a long time ago (4 1/2 years between them). Will it pass? She’s a happy, healthy baby …
The (very concerned) GP, who’d never seen anything like it, referred us to the non-emergency, urgent clinic at our local hospital.
Cue tests, more tests, fasting, sedation and MRI scans. A very long few days of constant worry.
Diagnosis: congenital nystagmus.
Prognosis: a non-degenerative condition. Unlikely to drive a car or catch a ball.
I don’t diminish their pragmatism. These outcomes are likely (most definite) in Claudia’s case. However, her vision is her only boundary. Apart from not being able to see very well, Claudia is wilful, stubborn, contrary, assertive, wise, articulate, bright, funny, sassy, endearing and beautiful – no different to any other child her age.
She has taught me to be patient, tolerant (not always easy when you’re being back chatted and outsmarted by a 6 year old!), inclusive and mindful of others. And has opened up an entire new way to see the world and its endless possibilities.
In time, we have also learned that Claudia is severely colour blind (she sees black, white and red for sure, the other colours kind of merge together – but she can determine between lighter and darker shades) and photophobic (she wears react-to-light glasses and an array of peaked caps and visors throughout the year).
There may be other issues that arise in the future, but we are closely monitored and very well looked after by the brilliant team at Royal Derby Hospital. We await genetic testing, too.
The remainder of Claudia’s senses, however, are on high alert. Her (somewhat selective!) hearing is refined. She hears music through her whole being. She dances like everyone is watching. Her grasp of language is beautiful and her interpretation of the world leaves me stunned and floored, regularly.
This girl endears anyone and everyone to her that crosses her path. And I know, she will move mountains.
Go get ‘em, girl. The world is yours.
