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Parents share their delight in their son’s success

When Maxine and Matthew Wilson’s son, Charlie, was diagnosed with nystagmus at six months old, they freely admit they went into a panic, which is probably what most parents do when suddenly faced with the prospect of their child growing up with a visual impairment. They thought he’d never be able to play ball sports or ride a bike. How wrong they were!

Charlie is now 8 years old and loves playing football, especially in goal. He has also learnt to ride a bike. In April this year Charlie amazed his parents by riding his bike for 10 miles along the camel trail from Padstow to Wadebridge. It must have been a challenging ride with lots of people cycling in front of and towards him on what is in places a fairly narrow path.

Proud Mum, Maxine, said:

“Charlie doesn’t let his special eyes stop him from doing anything. Lots of people aren’t even aware of his nystagmus. They just know he wears glasses. Keep going Charlie. We are so proud of you and love you lots.”

Volunteer for the Nystagmus Network

The Nystagmus Network is on the look out for more volunteers to help us support our growing community!

We believe that a peer-to-peer support model will make a huge impact on everyone in the nystagmus community. This model is based on support being provided by people who understand the impact of nystagmus on the various groups the charity supports. We want our volunteers to empower parents, teachers and adults with nystagmus and help us build a team of nystagmus specialists to support further the work of the charity.

The volunteer role

We believe that it is important that we have volunteers who are specialists in particular areas which the charity supports. So, we are asking for those people who are willing to answer any emails and / or phone calls from people from the following groups:

  • Parents – babies
  • Parents – school
  • Advocacy
  • Teachers – early years
  • Teachers – primary
  • Teachers – secondary
  • Adults – acquired nystagmus
  • Adults – congenital nystagmus
  • Fundraising
  • Events
  • Overseas

All volunteers will be required to adhere to our volunteer policy and they will be given training to undertake their role.

If you think you can make an impact and would like to volunteer for the Nystagmus Network please complete the form below. We will be in touch once we have reviewed your application and thank you for supporting the Nystagmus Network!

Application form

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Wobbly Wednesday 2nd November 2016 – What will you Wobble?

With just four months to go until the biggest day of the nystagmus calendar, Wobbly Wednesday 2016, it’s time to launch our brand new campaign – “What will you Wobble?”

All you have to do is think of something that wobbles – it’s not that tricky.

You could have a wobbly tooth, or you might wobble when you try to walk in high heeled shoes. Then there’s the Millennium Bridge in London. That was pretty wobbly for a while. There are lots of toys that are wobbly. What about your favourite Subbuteo football team or Weebles – they wobble!

Getting involved

So now we’ve got you thinking about the best thing to wobble, the next step is to take a photo or video clip and send it in to us here or upload it to social media with the #wobblywednesday hashtag.

Make a donation and raise awareness

We are asking everyone who takes part in our “What will you Wobble?” campaign to make a donation to the charity and to use the text below when sharing their photo or video clip.

I’m wobbling for #wobblywednesday!
Text NYST77 £5 to 70070 and wobble for #nystagmus!

Win a prize!

As part of the “What will you Wobble?” campaign the charity will choose the best video and photo. The winners will recieve a small prize!

Inspiration?

If you are in need of some inspiration to take part in the “What will you Wobble?” campaign there will be lots of ideas and things to download from the special Wobbly Wednesday page on our website very soon.

We’ll be posting all the best pictures and details of all the best events planned here too, so please keep looking and check if there is something in your area you can join in with.

We look forward to everyone getting involved with Wobbly Wednesday!

A successful open garden event!

Garden lovers had a rare opportunity this weekend to visit the picturesque gardens of a Wiltshire country estate and help people affected by nystagmus.

On Sunday 12th June Fonthill House, near Tisbury, was opened to the public from 12 – 5pm with proceeds from the event going to the Nystagmus Network. The gardens themselves cover approximately 12 acres, comprising both formal gardens and also an extensive woodland garden, which have been redesigned and redeveloped since 2006.

Lord Margadale currently opens the gardens only three times a year for various good causes and decided to open them for the Nystagmus Network because one of his workers (James Kirk) has a young son with nystagmus. Debbie Kirk, wife to James and mum to Ryan, helped organise the event. She was delighted that it was a success and raised over £2,000 for the Nystagmus Network.

We would like to say a big thank you to James, Debbie and Ryan for holding such a successful event! The money they raised will make a big difference to all the work we are doing supporting the nystagmus community and the new projects we have planned. If you would like to hold an event or make a donation to the charity please get in touch with us or visit our Justgiving page here.

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.

Informative, inspiring, emotional and motivating!

Over 170 people travelled to the Hilton Hotel, Reading on Saturday 7 May for the Nystagmus Network’s annual Open Day 2016. Among them were parents, their children, adults with nystagmus, clinical and research experts, exhibitors and speakers, charity trustees and volunteers, the lovely ladies from the Facebook group ‘Wobbly Days for Nystagmus Families’ and two very well behaved dogs! Nystagmus Network Chair, Richard Wilson, kicked off the event with an ice breaker designed to ensure that everyone had the opportunity to meet another parent, adult or child with nystagmus and also the clinicians and medical researchers who joined us at our Open Day.

Keynote speaker Kristina Venning sought to allay the worst fears of parents with newly diagnosed children as she highlighted the successes of her career in the media.

The well attended and ever popular breakout sessions covered such varying aspects as living with a family member who has nystagmus, building a positive relationship with your child’s school, applying for benefits and the world of work.

Nystagmus Network Information and Development Manager, Dan Lewi, seized the chance to launch the charity’s brand new look, with a new website and logo. Both were received to great acclaim and clearly signaled a new direction and a more positive outlook on the future for nystagmus sufferers everywhere. Photos from the event can be found on our Flickr page here.

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.

Sophie Brown

Can people see past my wobbly eyes?

It’s a traumatic experience for parents when their baby is diagnosed with an unknown condition. Mine didn’t know what to do when the doctor told them that their little girl had nystagmus; but then what could they actually do?

It’s just one of those things. Yet it didn’t seem like that at the time. Even though my condition was congenital, the initial reaction wasn’t to consider that I wouldn’t know any different. Consequently they had no idea what to expect. Would it prevent me from leading a normal life and making friends?

I was brought up not to consider my visual impairment a disability, nor a negative characteristic that limited my activities. At a younger age I couldn’t care less that I was different. It didn’t bother me that I couldn’t ride a bike without stabilisers. My friends and I preferred playing Polly Pockets and going on the swings anyway. But that all changed when I hit the teenage years.

Makeup is something I was never fond of, apart from when I was seven. I attempted to crayon mine and my friends face for a party, but our parents wiped it off again. Then for my 13th birthday mum wrapped up eyeliner, mascara and numerous other makeup tools I never knew existed in a box, kind of like a ‘maturity package’.

The first time I ever applied mascara was in the school toilets. Every girl was wearing makeup apart from me so I decided to join in. Long story short, the mascara ended up everywhere except on my eyelashes. Unlike the other girls, I couldn’t judge where my eyelashes were in relation to the mascara brush. I’m sure you can imagine the response when I came out of the bathroom.

I remember lying on my trampoline next to my best friend the weekend after the mascara incident, commenting on how pretty she was. She returned the compliment, which I automatically brushed away; how could I be pretty when my eyes wobbled and I wore glasses? Plus all the girls at my school said that makeup made you more ‘beautifuller’ (yes I am aware that is not a word). So using their logic, I would never be their definition of beautiful.

Looking back on this now I realise it was complete and utter rubbish! But when you’re a teenage girl who is slightly different from her friends, it’s hard, especially at sleepovers when you’re the one falling asleep at 9pm when you vowed to stay awake all night; but true friends see past that.

Half way through my third year at school I moved classes due to the nasty digs some people I once called friends made on a regularbasis. Nothing was aimed directly at my eyesight, but the little things they did were, such as deliberately sitting in the middle row of the science lab knowing that I wouldn’t be able to see from there. To be honest, you don’t need people like that in your life.

The new set of friends I made were great. They taught me how to put mascara on for starters. They’d sit with me in the front row without me having to beg and plead with them. I was introduced to a larger group of their friends as well; a mixture of boys and girls. I was extremely wary of the boys at first, but once they started talking to me I got along with them just fine. In fact I now have more guy mates than girls!

There was one I particularly took a liking to and it turns out that we were ‘extra time buddies’ during our exams. He’s dyslexic; I have nystagmus. He can’t read; my eyes get tired reading. I’m still a book worm though! We were a match made in heaven/hell/ whichever way you want to look at it.

By the time we were in the fifth year of school we were officially a couple. Okay it took a lot of focusing and straining to try and stare into his eyes, but, on a brighter note, we won ‘The Cutest Couple’ award at prom!

Skip forward seven years (I feel so old) and my eyes have not had a negative effect on my life so far, just as my parents originally thought. Believe it or not, I can’t imagine life without wobbly eyes! They’ve made me see people’s true colours. If I didn’t have nystagmus I would probably still be friends with the first group of people I hung around with, but, let’s face it, you don’t need to be with people who exclude others because they’re different. I wouldn’t have met my boyfriend (yes, I’m still with him!) if it wasn’t for my eyes.

If I didn’t have nystagmus I wouldn’t have something interesting enough in my life to blog about and if it wasn’t for my blog, I wouldn’t have the job I’m currently in. Bottom line is that every cloud has a silver lining.

Hana's daughter

I’m the parent I never thought I’d be

I had always planned on being a laid back parent. My son, born with perfect vision, had been a breeze. And then my daughter entered school. Even though she had albinism and nystagmus, I assumed I’d continue being easy breezy. I would explain the accommodations she needed, the teachers would listen, and we would all go merrily on our way.

While somewhere in the back of my mind I probably knew that this was an unlikely scenario, I still wanted it to be true. No one could tell me for certain what kind of accommodations she’d need because no one knew exactly what her capabilities were. Maybe her vision wouldn’t be that bad. Or maybe it would be terrible. But I was pulling for “not that bad” and if “not that bad” turned out to be the case, then maybe we could squeak by with only minimal accommodations. And maybe I could continue being the laid back parent I wanted to be.

Preschool went well. She sat in front on the rug. Her teachers let her come up and look closely at books being read to the class. See – not that bad, this whole visual impairment thing. And then my daughter’s vision teacher suggested she take a test to see if she could qualify for the gifted program in New York City, where we live. My son was in the program already and loved it. It made sense that my daughter would qualify for the program too. I checked off a box on a form requesting a large print test, and thought, maybe that’s all she needs. Maybe we go through life checking off boxes for large print tests, and everything else just goes according to plan. But when the results came back, it was obvious that large print tests were not going to be enough.

When I called the department of education to say I thought perhaps she hadn’t been able to see the large print test, they dismissed me. Not everyone qualifies for the program, they said. Clearly I was just another pushy mother who felt her child’s genius hadn’t been properly evaluated. It’s possible that if I’d been listened to the first time I might have continued being the laid back parent of my dreams, or maybe this was the inevitable shaking I needed – someone grabbing me by the shoulders and saying: if you don’t stand up and yell for your daughter, no one else will do it.

So I stood up and yelled. And many months and meetings later, the department agreed to give my daughter the test in a digital format where she could control the size and the contrast. Lo and behold: she tested into the program. But it’s hard to be the screaming mother all the time. And by the time my daughter started Kindergarten I thought: I got this. I got the largest department of education in the country to change the way they test visually impaired children, after all. Surely I can navigate Kindergarten.

I met with my daughter’s teachers before school started to walk them through the technology she’d be using. The rules, which were new to me then but I can now recite in my sleep: she sits in the front of the class, she uses an iPad, please remember to charge her CCTV. And then one day my daughter came home and said she hadn’t been able to see her math test. So I emailed her teachers.

“But she didn’t say she couldn’t see the test,” they wrote back. “And also, she got all the questions right.”

I picked up the phone and called the teachers, and said the words that I now know I will be repeating often and for the rest of my life: just because she did well doesn’t mean that with the correct accommodations she can’t do better. I wish the cadence were better, that there was a short poem I could write or a snappy six word phrase that could convey the same information, but if there is I haven’t found it. Nonetheless, this has become my mantra.

Last month my daughter started first grade. At the meeting before school with her teachers I shared the story of the math test and the gifted test. We also discovered together that her reading level had been assessed incorrectly.

“We are navigating this together,” I said to the teachers. “If we’re not partners then it’s not going to work, and I’m going to be calling you up saying she couldn’t see something.”

I don’t know if I came across as an overlycrazed helicopter parent or not, but I don’t care. This is the kind of parent I am now. The next week, when my daughter came home from school with a book at her correct reading level, accompanied by a CCTV and a note from her teachers asking if I might be able to download the book to her iPad, I knew that this is how it will be from here on out. I can luxuriate in being laid back with my son, but when it comes to my daughter, I’m the parent I never thought I’d be. And I’m okay with that.