When I first started school I really struggled to read. It took me months and months to read the first Harry Potter book for myself in large print. I got lots of help at school, though, and especially at university. Now I’ve got a degree in philosophy.
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 it has all been a guessing game.
Ben’s just had a great year at nursery and we’re getting ready for him to start P1 in September. He has developed great and hasn’t let it stop him.
Such a positive, caring boy who’s had so many hospital and doctor appointments, any other child wouldn’t stick it.
I was born with nystagmus and always struggled at school both in the classroom and in PE. All throughout my education it’s been a continuous trip to the printer to enlarge text books and print outs. Things didn’t really change at college. I was told I had dyslexia which could be linked to the nystagmus, because of the way my brain is seeing the words. I was offered support sessions to look at alternative methods of learning. I then went on to university and this year I am graduating! I have studied law for the past three years and in September will be going on to train as a barrister. I anticipate many challenges due to nystagmus such as mock court situations. Reading facial expressions and looking at evidence may be challenging, but nystagmus won’t stop me.
There are bound to be loads of bake sales for Nystagmus Awareness Day 2018 on 20 June, so we thought it would be a great idea to have some Nystagmus Network cake flags made, especially for you.
Order your free cake flags today. But hurry, they’re going like …
At 12 midday on Wednesday 20 June, Nystagmus Awareness Day, we can get the whole world talking about nystagmus across Facebook and Twitter. All you need to do to take part is follow this link to sign up. Please join us to get the word nystagmus rippling out across the world.
On national and international Nystagmus Awareness Day, Wednesday 20 June, why not help us really get ‘nystagmus in the open‘ by joining Julian Jackson on one of the final legs of his 1,000 mile Big Blind Walk?
On that day Julian will be walking from Helmsdale to Dunbeath in the Scottish Highlands along the A9 John O’Groats Trail. If you can be there to cheer him on, please let us know and we will send you a free Nystagmus Network T-shirt to wear.
Julian is walking to raise £300,000 for sight research. That will be good for all of us. He deserves our support.
To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.
Please help us to promote national and international Nystagmus Awareness Day, on Wednesday 20 June, in clinics and hospitals all over the UK and the world.
We have free to download PowerPoint presentations which can be displayed on a screen in reception. We also have a free bunting template.
For those organising a fundraising event, we also have posters – and don’t forget your bunting!
If you would like some leaflets or postcards to take into your eye clinic the next time you visit, or some balloons, please contact us.
To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.
Schools can take part in Nystagmus Awareness Day, especially if there is a pupil who has nystagmus. Talking about nystagmus, celebrating ‘nystagmus in the open‘ will help us raise awareness of the condition and help the children affected explain it to their friends. This can help remove the sense of isolation some children feel. We have a free to download PowerPoint presentation, perfect for assemblies and form time, a Lesson Plan and our special booklet for children, Wobbly Eyes. If you would like some balloons, please contact us.
If you would like to help us fundraise on the day, with a bake sale, fun sports or non-uniform day, you can publicise your ‘nystagmus in the open‘ event with one of our free flyers. There is even a template, so that the children can make their own bunting. They are all free to download.
Thank you for your support, from everyone in the nystagmus community.
To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.
Calling all sports and athletics clubs – we want you to join us for ‘nystagmus in the open‘ on national and international Nystagmus Awareness Day on Wednesday 20 June. We need you to help us prove that children and adults with nystagmus can take part in sport and fitness, despite their visual impairment. So please organise a fun sports day or a try out session at your local club or recreation ground and invite everyone to come along. We have free flyers to help you publicise your event. There is even a free bunting template. But if you would like some balloons, you will need to contact us, please.
Last year, with the ‘nystagmus big swim’, we proved that people with nystagmus can be amazing swimmers. Our nystagmus water babies also helped us raise a lot of money through sponsorship. You can help us achieve the same success this year.
Thank you for your support.
To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.
