A child swimming underwater.

How amazing are you?

Have you done something amazing, something you never thought possible, because you have nystagmus?
Has your child exceeded all your expectations?
If so, we want to hear from you.
Last year we heard about the fantastic swimming and fundraising achievements of Annabelle, Tyler and Poppy. This year we want to hear your stories.
Between now and 20 June, Nystagmus Awareness Day, we’re collecting all those lovely stories of adults and children who’ve achieved great things despite having nystagmus, or maybe even because they do.
We’ll feature all the best stories right here on our blog and on our Facebook page, so everyone can celebrate with us your amazing nystagmus successes.
If you’d like to help us to support everyone with nystagmus to be amazing, please text ZING18 £5 to 70070. Thank you.
Please complete the form to let us know about your amazing nystagmus success story.

Nystagmus Awareness Day – for snow men!

Whilst we are all looking forward to the very first Nystagmus Awareness Day in the summer – on Wednesday 20 June – for those of you who miss the old days, when Nystagmus Awareness Day was celebrated in November, you can get this year’s ‘Wobbly Week’ off to a great start by coming sledging or skiing with us at the Snow Dome, Milton Keynes.

Jamie Fuller, from the Outspan Rebels VI ski team, is organising the first of two amazing Nystagmus Network Snow Camps. It takes place on Sunday 17 June.

There will be skiing and sledging for adults and children with nystagmus, their fully sighted parents, siblings and friends. Everyone is welcome to come along. Each session costs just £10 per person.

Charlotte Evans MBE will be there on the day along with Jamie and the Outspan Rebels, themselves. There might even be a few very special visitors!

It is sure to be a great day. So please join us if you can. To register your interest, please contact us.

To make a donation for Nystagmus Awareness Day, please visit our Justgiving page. Thank you.

Meet Lucie!

Hi. I’m Lucie from Hampshire. I’m 21 years old and I’ve had nystagmus and ocular albinism since birth. I wanted to offer some comforting words to any young people or parents of young children concerned about how rich a life you or your children can expect to live. As a 21 year old living an active and interesting life is paramount to me and I can assure you that my childhood was never boring!

At the minute I’m working as an apprentice at a riding school and training for equine qualifications. I’ve passed a fair few already. I have my own horse called Heidi whom I adore. We compete in affiliated show jumping regularly. In the past I’ve also enjoyed skiing, trampolining, golf and rock climbing. I’m also really into running, especially long distance, and I’m hoping to run the London Marathon to raise money for the Nystagmus Network next year.

Like many people with nystagmus, I struggled at school. Asking the teachers to write in a dark pen on the whiteboard and enlarge worksheets was always awkward, but, if you can manage to pluck up the courage, it will be easier next time.

PE was difficult, especially ball games. I used to get hit on the head a lot by the ball because I didn’t see it coming. So we invested in a rugby hat and a gum guard. I suppose I looked a little odd, but I didn’t have to sit out in PE, which I would have hated, so it was good with me! I have some difficulties when I’m jumping or doing dressage twist. I have to remember patterns and sequences and the colours of the jumps so that I know where I am.

When I was learning to play the piano, rather than reading the music, it was easier if my piano teacher played me sections of a piece and I copied them back. When my friends and I go out clubbing, I always make sure I’m attached to someone so we don’t get separated. My friends are all amazing and understand. We went to a club once that had a lot of smoke and strobe lighting that made it difficult to see, but we all just held hands and danced like that so we didn’t get lost! I think my main message is that you can do whatever you want to do and you will find a way around it to make it work.

Mark

Mark’s story

I’m the youngest of three children and I think that helped a great deal in dealing with Nystagmus – at least I hope it did. Either that, or I was born into a group of eccentrics who somehow guided me through a foggy minefield to where I am now. I often wonder how it happened – luck or design?

My arrival back in the 60s was a great cause for celebration. My family had just moved from Dover to a market town nestled at the base of the South Downs. My brother and sister were two years apart and happy healthy children. My father had just accepted a promotion as a district engineer. They had a new house on a new estate and to top it off I was born.

Apparently I didn’t wreck the party. My sister remembers dad breaking the news to her on the way to the nursing home. ”He’s got something wrong with him, shall we send him back?” He was promptly whacked around the back of the head by my grandmother, who reminded him first to keep his eyes on the road and second, Aunt Jess had also had congenital nystagmus, “and she could play anything on the piano after a sherry”. That’s true, said Dad, “but that talent may not be enough to get him into the civil service or a cricket team”. Another tweak silenced him and my eyesight was never mentioned again.

Once I had been allowed home, I settled down to a long period of recumbent bliss. I was very happy and didn’t want to exert myself. I had blond spiky hair, a fat little face and a happy disposition. Dad would often get someone to poke me so he could capture a smile on his latest gadget, a 35mm cine camera. It wasn’t until after a year, when I still showed no signs of sitting up, that people started to worry. Dad complained that the films were getting boring and that there was a limit to how interesting a horizontal baby was.

Mum took a more practical view. I had all the tests of the day and saw doctors, specialists and health visitors. Sure enough, in my own time, I did eventually sit up, speak, eat and learn to walk. It was here I made my first big mistake. One Christmas, I picked up a discarded plastic ball from a cracker and threw it to my brother. My father’s face lit up with excitement and a huge grin spread across his face, fuelled by a seasonal eggnog. Mother sighed as my father reached for a cricket stump and held it aloft, brandishing it as some kind of ash light sabre. “That’s me lad!” he cried, as he knocked the fairy from the tree, lost his footing and collapsed into a plate of mince pies. My training as his young apprentice was about to begin.

Dad and Obi Wan did not have a lot in common. I’ve seen all the Star Wars films and I don’t recall the Jedi master ever calling Luke Skywalker a “fat head” or chastising him for avoiding a particularly nasty full toss. To be fair, I also don’t remember him giving Luke as many hugs, smiles and kisses as my father gave me. What they did have in common, however, was love, support and a willingness to let their young students live their lives and make their own mistakes.

It’s only with the birth of my children that I realise they must have been incredibly apprehensive about sending their youngest out into the world. True, they had some history of bringing up children, but now they were in uncharted waters. They never pushed me in to see if I sank or swam, they just encouraged me to paddle and watched from the shore.

All was bobbing along nicely until, by a disastrous series of events, I was picked for the school cricket team…

Sound tennis

have always enjoyed sport but often found that trying to take part was frustrating due to my nystagmus, particularly with sports that require seeing the movement of a ball and connecting with it. I tried tennis a few times when I was younger but it seemed impossible. I would never be able to play it.

In 2014, however, we started playing Sound Tennis in Brighton and Hove. Sound Tennis uses a spongy ball that can be heard when it bounces. Those with no or very limited vision (B1 & B2) are allowed 3 bounces. Partially sighted players (B3) are allowed 2 bounces. The extra bounce(s) allow more time to locate the ball. For me lighting conditions and colour contrast make a big difference so in some situations I rely more on hearing to tell where the ball is. Little did I realise how addictive the game would be. I learnt to serve, hit backhands and forehands and gradually hold rallies and hit winning shots.

My colleague, Christine Laurence, who also has nystagmus, had been travelling to London to play the game and contacted me to ask if I would be interested in helping to set up a local club. We organised a launch in February 2014 and were amazed that 29 people turned up, 19 of whom were visually impaired. Sound Tennis Sussex was off to a flying start.

Since then we have helped to set up groups in Shoreham and Eastbourne with others planned. A number of us have taken part in competitions in Newcastle and Cambridge and the National Visually Impaired Championship at the National Tennis Centre at Roehampton, London. We also organised a tournament against a team from London and held a friendly tournament with the Eastbourne club. In November 2015 we received the disability programme award from Tennis Sussex at a ceremony at the Amex stadium.

We have a number of players with nystagmus. The age-range of players is from children to the over 80s. Many like me have never been able to play a racket sport before, but others have been thrilled to find that they can continue or resume playing tennis after a diagnosis of sight loss.

Sound Tennis is growing fast in the UK and across the world and there are ambitions to get the sport into the Paralympics. There are a number of clubs in cities around the country where you can go along and give it a try. Visit www.soundtennissussex.org.uk to find out more.