Sunday 20th June is Nystagmus Awareness Day.
Nystagmus is a visual impairment that affects ability to focus, judge speed and depth and recognise faces.
Our son Jack has congenital nystagmus, which means he's had it since birth. However, he had so many medical issues to address that we didn't realise until he was seven months old. We wondered why his eyes constantly moved from side to side and one day thinking about how everyone says babies focus on your face (which Jack didn't), we realised we should ask the doctor about it.
Looking for information about what having nystagmus means for Jack and how we can support him, I found the Nystagmus Network. The charity provides support for adults with nystagmus and families of children with nystagmus. It's made such a positive difference and the resources they provide for explaining nystagmus to other children and teachers will be invaluable when Jack goes to school this September. They also raise awareness and support, as there's currently no cure for nystagmus.
Rich, Jack and I are doing the 5km Welly Walk for Raindrops on Nystagmus Awareness Day - 20 June. Our friends Sarah, Nick and Eleanor are joining us...I can picture us wearing our wellies on a lovely sunny day. The raindrops theme was inspired by someone with nystagmus who only realised in adulthood that people could see rain falling - he couldn't.
Now that you're aware of nystagmus, could you please help to raise awareness by telling one other person about nystagmus today? At least 1 in 1,000 people have nystagmus and they may have had it since birth or acquired it in adulthood. Perhaps you notice someone's eyes are moving quickly or their head is turned to the side and you think they're not looking at you or not paying attention, but if they have nystagmus, it could be that they are looking at you and paying attention, they're just having to adjust their position so they can focus.
If you'd like to find out more, you can visit Nystagmus Network – Supporting people living with nystagmus
We never know what others are dealing with, so let's remember to be kind and encourage others to do the same.
Thank you for reading!