Today was the annual Nystagmus Network Open Day, which this year was held in Cardiff, Wales.
Nystagmus is a complex visual impairment, characterised by involuntary eye movements, affecting focus and depth perception. It’s thought to affect 1 in 1000 people. There is currently no cure.
Boy 1 was diagnosed at three months old, after our Health Visitor spotted something was not quite right. His eyes continually move from side to side, faster when tired, ill, or excited which makes it harder, and takes him longer to see.
Nystagmus Network, a national charity have been a fantastic resource and source of comfort. Boy 1 and I (plus sometimes other family members) have attended the open days most years since he was born. It’s very special to be sat in a room with 200 people who either have the condition themselves or know what it is. And this year was no exception.
Highlights of the day included:
- Sitting on a table with John Sanders, previous employee of the Network, and author of the Northwick Bear stories, and Roelie Kamminga from Holland, author of Nystagmus in Berweging
- Standing in the queue for lunch next to a young lady who’d travelled all the way from the Northern Territory in Australia to have the opportunity to speak to the researchers about taking part in trials with magnets to try to slow the nystagmus movement
- Boy 1 enjoying breakout sessions for children including one with Wil Maudsley, a community rugby league coach for Warrington Wolves Charitable Foundation. They had a great view of the Millenium Stadium from their room.
- Seeing Ben Haynes, sing and play. When the Nystsatmus Network Open Day was at Newcastle a few years back I helped organise a party the night before where Ben played a whole set. He’s an inspirational musician who created “Do you think I’m able” for the 2012 Paralympics. Huge congratulations to Ben and his wife who are expecting their first child in January 🙂
- And last but not least winning a raffle prize, which could have been a £300 Dyson hoover, but was actually the game Mousetrap – which Boy 1 had seen on the way in and wanted to win. There were many raffle prizes, and the winning tickets were to be stuck onto prizes to make it simple and easy for people to collect. We had to leave slightly early to catch our train, so were the first down. As tickets hadn’t been stuck onto prizes, they said to Boy 1 he could pick whatever he wanted. I was collecting our case from round the corner and could hear the conversation. My head was shouting wildly “pick the hoover”, but once I saw how happy he was with his game I couldn’t spoil the moment – plus I had no idea how I’d carry a massive hoover 6 hours on a train. You win some, you lose some!!!