This Nystagmus Awareness Day we’re asking you to share your story. This is James’s story.
You can share your story here
Until my son Sullivan was born, we as a family had no idea what nystagmus was, that there was a charity called Nystagmus Network and a wonderful community available for support.
We noticed within a few weeks of Sullivan being born that something wasn’t quite right with his eyes. After several doctors and hospital appointments and being told repeatedly ‘‘He’s only a baby, stop worrying’’ we finally found out Sullivan has nystagmus, with ocular albinism.
Receiving this diagnosis was hard to take. As a parent you want to do everything you can to protect them. You also have the initial shock which clouds your rational thinking – which is something I have noticed through the Nystagmus Network forums. Panic is the first reaction which is only magnified once you turn to Google – Never turn to Google!
As a few weeks passed and further appointments were made at Moorfields Eye Hospital with the incredible Maria. Maria is unbelievable. She was available for video calls and in person appointments – Maria has also supported Nystagmus Network events, so something to keep an eye out for!
Our story with the Nystagmus Network started with the Facebook Parent Forums, which provided our first chance to speak with other parents with children with Nystagmus. Its hard to explain how beneficial that was and still is today! Once meeting some of the trustees and most importantly Sue, I decided to focus on local fundraisers in Jersey with an annual Nystagmus Golf Day and I’m now proudly a trustee.
Sully is now 3, due to start pre-school this September and primary school the year after. It’s from there I feel his struggles will be more noticeable. But we will deal with them as they come. This is only the start of our nystagmus story with great things to come.
If anyone with Nystagmus is to read this, then please get in touch with the charity or myself directly!
James
