Vicky is a nystagmus Mum who came up with a really different way to raise awareness of nystagmus in the run up to Nystagmus Awareness Day on 20 June. She tells us: “Here are some rocks I’ve painted as part of the “Rocks of Swindon” project about hiding and finding rocks around Swindon. I thought … Continue reading A unique way to raise awareness
Rylan’s Mum says: “My son Rylan was only diagnosed with nystagmus in Reception at school, although I had always noticed his eyes swinging from side to side. He is just turned six and is the first free reader in his class! We are so proud as we know scanning the words isn’t easy for him … Continue reading How amazing is Rylan?
My son Alfie who is almost 10 has never let anything stand in his way despite now being blind in one eye and having Nystagmus. Alfie persevered in learning how to ride his bike last year and got one for his 9th Birthday. He is going to be sitting the 11+ this September because he is determined … Continue reading How amazing is Alfie?
Here’s an amazing story from a very proud mum. When my second son, Ben was born, from about 3 months we noticed there was something wrong with his eye movements. After nearly a year of waiting, research and MRI scans he was diagnosed with Congenital Nystagmus. We weren’t sure how this would affect him and … Continue reading How amazing is Ben?
Hello, my name is Charlotte and I am mother to a ridiculously delicious six year old girl named Scarlett. In every way Scarlett is a picture of happiness and joy. She needs very little to keep that big smile spread firmly across her angelic face, literally affection and biscuits will do the trick! I am … Continue reading My bouncing eyes baby!
We wanted to begin 2017 by sharing a good news story by Meg Tatton which we hope will inspire other parents and show that there should be no barriers in the classroom. Meg’s ten year old daughter, Lily, has recently passed an entrance exam and won an academic scholarship thanks to the support she received from … Continue reading An inspiring story about passing exams!
My daughter has congenital idiopathic nystagmus. Idiopathic means that despite having every test available no physiological cause can be found. Congenital means that it was either present at birth or very early on in life. I think I can pinpoint the day her nystagmus arrived. Lying on the rug in the picture above she is … Continue reading Discovering your baby has nystagmus
This week the video blog at the Nystagmus Network features our very own Sue! The video is her interview with Peterborough Community Radio which is hosted by one of our very loyal and long standing supporters Tim Heywood. Sue and Tim discuss the Nystagmus Network, nystagmus and Wobbly Wednesday.
Our son Joshua was born with oculo-cutaneous albinism in 2003. It was a surprise to both our families as no one on either side had any recollection of anyone in the family having albinism. The thing that has affected Josh most is his visual impairment. His eyes let in too much light due to the … Continue reading Do you want to ski like Josh?
I made my first contribution to the Nystagmus Network Focus newsletter after much parental cajoling and days, weeks, months, if not years, of adolescent procrastination, in the mid-1990s. To save readers from searching the archive, I’ve got what I consider to be mild nystagmus and bad short sight and astigmatism. Contact lenses are better than … Continue reading A mum with nystagmus shares her story