How amazing are you? – Page 2

Thank you – you are amazing

As ‘wobbly week’ draws to a close for another year we just wanted to thank everyone for making Nystagmus Awareness day 2019 such a success.

Thank you to our fundraisers, event organisers and all the parkrunners. Thank you for your amazing nystagmus success stories, your videos, photos, your donations, presentations, displays and quizzes and thank you, too, for baking all those cakes!

We couldn’t do any of this without you. You truly are amazing!

How amazing is Aneeba?

Thank you for sending us all your nystagmus success stories. We just love to read them and we know they bring hope and inspiration to so many people.

Today we introduce Aneeba.

Aneeba has a rare genetic condition called Lawrence Moon Bardet Biedl syndrome. She’s always worn glasses since she was 8 months old and has ‘wobbly eyes’. Despite this Aneeba volunteers for Sense, RNIB, British Blind Sport, Sight Loss Council and Focus.

If you’d like to share your amazing nystagmus story, please contact us today. To help the Nystagmus Network support even more people to reach their amazing potential, please consider making a donation. Thank you.

How amazing is Ellen?

Throughout June we’ve been celebrating your nystagmus success stories in our campaign ‘How amazing are you?’

Today, Ellen shares her story:

“My name is Ellen and I’m 32 years old. I’m married and have a little boy who is 3. He’s my inspiration. He’s also my eyes whilst I am out and is very switched on to my sight difficulties. I have nystagmus, astigmatism and have only recently been diagnosed with ocular albinism.

‘My parents have always been incredibly supportive. They’ve told me that, soon after I was born, they became concerned that I couldn’t follow objects. They were told I had nystagmus, caused by a magnesium deficiency.

‘I knew as a young girl that I wasn’t “normal”. I struggled to see things at school and was bullied for having “funny eyes”.

‘I’ve always tried to adapt, by doing stuff my way. Sometimes this can look more complicated or strange, but it works for me.

‘During my school years I worked and worked, but they were some of the hardest of my life. I’d struggle to read from the white board, often sitting next to friends to copy from their work books. This was my way of doing things.

‘My dream job was always to work in the emergency services or armed forces. At a Year 11 careers day I was told I wouldn’t be able to do either, because my eye sight was so bad. So then I was stuck and didn’t know what I wanted to do.

‘I thought long and hard and decided that I’d go into sixth form and do heath and social care, with a view to applying for a nursing diploma in mental health. I can remember teachers telling me I’d never be able to do it as I wasn’t intelligent enough. I now put this down to struggling at school, not being able to see things on the board or in books, often falling behind in subjects. I was able to mask my struggles well.

‘My parents recently told me that a teacher had in fact phoned them, advising them to make me quit my A levels. They said I was struggling too much and would never be able to complete the course. But my parents believed in me and never asked me to quit. Instead, they encouraged me and supported me all the way.

‘Around that time I started driving lessons. Whilst driving, my Mum asked me to read a road sign. I said I couldn’t see one! Then she asked me to read a number plate. I couldn’t see it. That’s when we realised how severe my sight was. An ophthalmologist then told me I wouldn’t be able to drive legally. I was devastated, but it wasn’t the end of the world. I’d already been knocked down so much, this wasn’t going to stop me.

‘I went on to nursing school to prove I could do anything I put my mind to. Three years of hard work, failures, tears, laughter and enjoyment followed and I completed my mental health diploma to become a qualified RMN (registered mental health nurse).

‘I’ve now been qualified for over 10 years and still love the job. In fact, more recently, I’ve landed myself a role I’ve only dreamt of doing, working for the ambulance service, triaging calls.

‘I find ways of doing things, adapting to my environment. I’m very open and honest about my condition and my colleagues are very supportive.

‘I’ve now been diagnosed with cataracts at the age of 32 years, which has impacted my sight, but this is being sorted soon.

‘So, to sum up: don’t let anyone ever tell you “NO” or “YOU CAN’T”. You “CAN”, just in your way! If I can do it, so can you! Be proud of your eyes, they make you unique.”

How amazing is Sonny-John?

In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?”

On Nystagmus Awareness Day itself a family shares their son’s amazing nystagmus story …

“Our eldest boy, Sonny-John has nystagmus, and from as long as we can remember he has been competitive. As soon as he learnt to crawl he had to be the fastest, actually motoring round on his hands and feet like Mowgli from Jungle Book, as it was quicker than crawling round on all fours.

‘He loves physical activity and we’re sure, if he could do sports all day long he would, and he has energy levels we can only dream of.

‘Sonny-John started gymnastics aged 4 where he went to Notts Gymnastics pre-school sessions.

‘Apart from gymnastics he’s taken part in football, kickboxing, GAA football, boxing, tennis and swimming to name a few.

‘He’s a very strong swimmer and has achieved his badges through to 800m.

‘But as Sonny got older and some of the sports got faster he struggled in situations where there were people moving quickly around him, and eventually it all got too much for him. He will still play any sport going given half a chance, but he can’t always compete as well as he would like.

‘Thankfully around this time Sonny-John started to concentrate on his gymnastics and was lucky enough to be selected for the Nottingham Gymnastics Boys Squad in April 2017.

‘He absolutely loves gymnastics and it’s been amazing to watch him grow in confidence and skill. Recently he competed in the East Midlands Under 8 Championships where he earned 5 individual golds and 1 silver medal, and was also awarded the East Midlands Under 8 all-round gold medal.

‘We are truly blessed and grateful to have such a talented boy, and, unless we point it out, most people don’t pick up on his nystagmus.

‘We’ve had great support from the Nottinghamshire Schools Visual Impairment Officer and the teacher packs from the Nystagmus Network have helped immensely educating his coaches all about nystagmus.

‘Prior to Sonny-John coming along neither of us had any previous experience with nystagmus. So, when you have a child who is diagnosed as having nystagmus it is very daunting, as you don’t really know how it will impact him and what to do for him. All you want to do is take it away for him and make his eyesight normal. When you find out it’s permanent and will never get better it’s a scary feeling and you feel extremely helpless as a parent.

‘Sonny-John, to his credit, never plays on it and rises to any challenge. It’s his strength that makes our family think anything is possible for him.

‘As we said, initially we knew very little about nystagmus and the information we were given by the Nystagmus Network literature and the couple of annual Nystagmus Network Open Days we’ve attended have been truly invaluable. Myself and my wife have completed a couple of sponsored tasks to raise money for the charity and we’d encourage anyone to get involved with the Nystagmus Network and the great work they do to raise awareness.”

How amazing is Jane?

In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?”

Jane believes that having a sense of humour really helps. Here she tells her story:

“My name is Jane and I have idiopathic, congenital nystagmus. My wobbly eyes have given me challenges, but have also made me determined and given me a sense of humour.

‘I have a degree in Library and Information Management and have worked in libraries for over 20 years.

‘I have never driven, but my experiences on public transport have given me plenty to talk about.

‘I have 2 beautiful, fabulous children. My son always introduces me by saying “this is my Mum and she is a bit blind”.

‘My cane is called Fred and he gives me independence. He’s also an excellent aid to dusting if I tie a cloth on him. I once used him to rescue an escaping helium balloon and cheated on my brother’s Easter egg hunt by poking eggs from high places.

‘So like any person, I get on with it and smile. Where there’s a will there’s a way and I get by with a little help from my friends and family.”

How amazing is Alfie?

In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?”

To his parents, Alfie truly is AMAZING.

Here’s what they have to say about him …

“As well as having nystagmus, Alfie also has FEVR, a progressive eye condition that affects only 1 in 100,000. He is blind in one eye, with 6/60 vision in the other eye.

‘It was always Alfie’s dream to go to grammar school, once he found out that was where the ‘clever boys’ went.

‘Alfie recently passed his 11+ and has gained a grammar school place. Out of over 5,000 children who sat the test in Essex, he was the only one with VI. Overall he came within the top 2% of all scores and is going to a school with only 120 in catchment places on offer.

‘Alfie also passed ski school in France again this year with flying colours, with the same instructor telling him he should apply to start training to be a Paralympian skier.

‘Alfie hasn’t let anything stand in his way and has achieved what he set out to do. Now he wants to study to become an Eye Doctor. To say we are proud is an understatement.”

How amazing is Claire?

In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?”

Claire is doing a fundraising tandem sky dive for the Nystagmus Network this summer, because she and her son both have nystagmus.

This is going to make her son even more proud of his Mum!

Mike explains nystagmus and benefits at Open Day.

How amazing is Mike?

In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?”

For those of you who don’t know Mike, he’s a hugely valued member of the Nystagmus Network team. He’s our volunteer benefits adviser and the fount of all knowledge when it comes to nystagmus, DLA and PIP.

Mike has helped 100s, if not 1000s of people apply for benefits, whether they’ve sought his advice on applications or appeals, attended his enormously popular Open Day workshops or simply downloaded our free guide to nystagmus and benefits, which Mike writes and updates for us each year.

Mike has nystagmus himself, but doesn’t let it stop him from pursuing his career as a professional benefits adviser, volunteering and just being a Dad.

So Happy Father’s Day, Mike and thank you for all you do.

How amazing is Phebe?

In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?”

Today Phebe tells her own nystagmus story.

“My name is Phebe and I am graduating tomorrow from the 5th grade. I love to play soccer, lacrosse, tennis and ski. I also love to hang out with my friends, sing and act. I am going to be a famous actor one day.

‘I have nystagmus. Sometimes it’s hard for me to see the smart board, recognise people’s faces, see when the sun is shining bright, but I don’t let that stop me from doing what I want to do. I am my own advocate at school. I just tell the teacher when I need to take a break and rest my eyes or I need to move my seat to see better.

‘Nystagmus doesn’t hold me back.”

How amazing is Ursula?

In the run up to Nystagmus Awareness Day on 20 June, we’re celebrating all your success stories in our campaign “How amazing are you?”

Today Ursula shares her own amazing story.

Hi guys! I just wanted to share my story with you as this may give other people with nystagmus, or parents that have children with the condition, hope.

My Mum didn’t understand nystagmus and just thought I had wobbly eyes. The optometrist told her I would grow out of it (hahaha) and I was never checked up on again.

I didn’t understand what it was, and neither did my Mum, so I didn’t get any help through school at all and ended up leaving early because I was bullied (for other things, not my nystagmus).

I have lived a very normal life! It’s important to be correctly diagnosed, but it has also been a blessing because I never felt any different and just got on with my life.

I’ve never been held back doing anything. I went to college and did my GCSEs and A levels (without ANY help from the education system, or any extra exam time) and I am now studying online to become a level 3 personal trainer.

Alongside this, I’ve been a shift manager in a very busy coffee shop (Prêt a Manger) for the last 4 years and I am also a bikini fitness competitor.

Also, today, the hospital told me my vision is good enough to legally drive!!!! WHICH IS AMAZING!

Nystagmus is not a life ruiner. I’m not saying I don’t have any side effects from it. I can get dizzy, struggle to focus and night times are particularly hard for me, but I have just always got on with it, put out positive vibes to the universe and it has always rewarded me.

Never feel alone.