Category: Parent stories

For Nystagmus Awareness Day 2023 we invited members of the nystagmus community to share their story to help people in the wider population to understand the condition.

Thank you to everyone who shared their story with us.

You can read all our nystagmus stories here

This is Mason’s story …

We first noticed Mason’s eye movement when he was around 8-10 weeks old. His eyes would jerk to the right. My elder brother also has quite severe nystagmus so instantly my gut instinct told me it was nystagmus, however I just never considered that my children would have it as I don’t have it myself, although my mum has very mild nystagmus. As Mason was born at 35 weeks and had some trauma surrounding his brain, we already had an extra eye and hearing test booked in. This meant we were fast tracked for an appointment which we were extremely grateful for! The Ophthalmologist clinically confirmed it – congenital jerk nystagmus. 

The first year of his life left us in constant worry about how he’d struggle to meet milestones. Would he be a late walker? Would he be able to drive when he’s older? However, as time has gone by, he’s really shown us just how determined he is to not let his eyes stop him from doing everything he wants. He began to walk around 15 months and now at the age of 2 he doesn’t stop running! His confidence can sometimes be a bit knocked down when exploring new, big places with a lot to take in, but generally he is fine once shown around and how to access what’s around him. 

We see a Visually Impaired teacher on a regular basis who will support him in nursery and school. She is just amazed at how able he is. His eyesight is incredible and he often spots things before I do! He does have a very mild prescription for glasses, but being the crazy active toddler he is, he won’t wear them and is more than happy to go without at his own choice. 

He loves kicking a ball about, loves playing with his cars, loves being outdoors and loves spending time with family. 

Personally, I don’t know what life with nystagmus is like, but I do know that with the right mindset and determination it can’t stop you from doing what you love. Everyday my little boy makes me so incredibly proud; his achievements motivate me to be the best I can too. 

Thank you to everyone sharing their stories with us for Nystagmus Awareness Day 2023.

You can share your story here

This is Claudia’s story …

Ours isn’t a complete journey, far from it. In fact, it’s just the beginning. Claudia is 6.

Claudia was diagnosed at 9 months old.

I’d noticed the flicker in her eyes.

Is this developmental? I’m not sure I remember her brother having the same issue, but it was a long time ago (4 1/2 years between them). Will it pass? She’s a happy, healthy baby …

The (very concerned) GP, who’d never seen anything like it, referred us to the non-emergency, urgent clinic at our local hospital.

Cue tests, more tests, fasting, sedation and MRI scans. A very long few days of constant worry.

Diagnosis: congenital nystagmus.

Prognosis: a non-degenerative condition. Unlikely to drive a car or catch a ball.

I don’t diminish their pragmatism. These outcomes are likely (most definite) in Claudia’s case. However, her vision is her only boundary. Apart from not being able to see very well, Claudia is wilful, stubborn, contrary, assertive, wise, articulate, bright, funny, sassy, endearing and beautiful – no different to any other child her age.

She has taught me to be patient, tolerant (not always easy when you’re being back chatted and outsmarted by a 6 year old!), inclusive and mindful of others. And has opened up an entire new way to see the world and its endless possibilities.

In time, we have also learned that Claudia is severely colour blind (she sees black, white and red for sure, the other colours kind of merge together – but she can determine between lighter and darker shades) and photophobic (she wears react-to-light glasses and an array of peaked caps and visors throughout the year).

There may be other issues that arise in the future, but we are closely monitored and very well looked after by the brilliant team at Royal Derby Hospital. We await genetic testing, too.

The remainder of Claudia’s senses, however, are on high alert. Her (somewhat selective!) hearing is refined. She hears music through her whole being. She dances like everyone is watching. Her grasp of language is beautiful and her interpretation of the world leaves me stunned and floored, regularly.

This girl endears anyone and everyone to her that crosses her path. And I know, she will move mountains.

Go get ‘em, girl. The world is yours.

We are delighted to share your stories of living with nystagmus to help raise awareness.

You can share your story here

This is Ella’s story …

Ella was first diagnosed with nystagmus at 3 months old. A routine check-up at the doctor’s turned into something completely different. The doctor told us she had nystagmus (this is caused by Oculocutaneous Albinism) but didn’t elaborate any further other than to say she would be referred to the eye hospital and she might not be able to see very well. As new parents this was frightening and very upsetting. We did have lots of support from the hospital and the Nystagmus Network who have been amazing. The helpline has made all the difference. Talking to someone who understands our feelings and just to listen to us.

Ella is now 4 years old and will be starting school in September. She is amazing beyond words. She participated last year in a dance show in front of a large audience, takes dance and swimming classes regularly, loves going on her scooter everywhere and she does not let anything hold her back. Her 8-month-old sister was also diagnosed recently and Ella said to us: “Well me and Lola will be able to talk to each other about it and support each other”.

Very proud parents. 

All this week we’ve been sharing your nystagmus stories to help raise awareness of nystagmus for Nystagmus Awareness Day 2023.

You can share your story here

Robyn was first observed to have wobbly eyes at the age of 5. With no family history of nystagmus, it quickly became concerning as to what was the cause. Robyn was seen by Ophthalmology who referred her on for what felt like every test going. CT head, X-rays, blood tests, ultrasound scan, referral to Neurology, Electro-Retinographic studies. Which she took all in her stride. My worry went from the possibility of nystagmus to the chance her wobbly eyes could be caused by something much worse. Thankfully, 18 months later, all tests clear, she was given a diagnosis of Congenital Idiopathic Nystagmus. It was at this point I discovered the Nystagmus Network.

Robyn, now age 7, will say there’s nothing wrong with her eyes, they’re just a bit wobbly. As a parent you worry about the now, and you worry about the future. However, Robyn’s love for life and pure determination have shown me I don’t have to be so worried. The hurdles she comes across she takes in her stride and discovers solutions for her to manage them in her own way. While she may not be able to hit certain expected milestones such as learning to drive and riding a bike is something we still haven’t quite mastered, despite the many tries (!) we’re able to celebrate other aspects of life and achievements#, from running races on sports day to threading beads onto string and an upcoming ballet exam she is determined she will get top marks in. I have been so incredibly grateful to the Nystagmus Network for all the information they have and support they offer. We will both continue to learn and adapt to future challenges, but I shall take heed from Robyn’s determination and resilience in how we face them.

This year for Nystagmus Awareness Day people are sharing their personal stories to help everyone understand what it’s really like

You can share your story here

This is Harshal’s story …

Our story starts in a nearby shopping centre, with a chance encounter with a friend who was working in the optician’s. She looked at our 6-month-old son, took a pause and then said “Wait here a minute”. She returned shortly after with another colleague who looked inquisitively at our son. They both looked at each other and then turned to us. “I think you should get him checked out” our friend said, in a calm and gentle manner. Our friend went on to say that she’d seen eye movements like our son’s before, but only during her studies and that it was best to get it looked over.

From there, the next 6 months or so are a bit of a blur. Right from the get-go, our consultant was pretty much certain that our son had nystagmus from birth. We always thought we had an inquisitive baby, not even thinking for a second that those eye movements signalled anything else. Nor did any of the friends or parents we regularly met. We had appointments, checks and lots of different tests to rule out anything more untoward and, at the end, we were pretty much in the same place, albeit with more confidence that our son had nystagmus. The consultant said that he would need to have routine check-ups to monitor his vision and that it was too early to tell how much his vision would be impacting his day-to-day life.

Fast forward six years and he is now in the local primary school and experienced his first taste of exams (Key Stage something or another): not that he can remember what he did or when! Thankfully the papers were already in larger text and spaced out, given the age range being tested. But like any cautious parents, we questioned if he needed any adaptations. No was the general response – he’s doing really well generally in his lessons and they will keep a check on him should that change. Life has been pretty uneventful for us when it comes to his nystagmus, with all the classes and clubs going ahead as normal. I don’t think any of his friends remember (or even recognize) that he’s got an eye condition. Thankfully we have just let it play out and he’s like any other child really. Sometimes we question whether he really needs to get so close to the tablet (for his homework), or whether he’s just being clumsy or less attentive when certain things happen. I expect things will evolve as he gets older and that the Nystagmus Network will have a lot of advice and guidance as and when we need it.

So back to the charity. Just after his diagnosis, I found the Nystagmus Network through a quick Google. I signed up immediately and became a member with a simple direct debit, thinking little of it for the first few years. The open days caught my attention but overlapped with work and family commitments so my interactions were limited to reading emails and looking over the resources on the website from time to time. Then a little later (sparked by some communications where the charity was looking for support) came an urge to use my professional background more in my personal life – that’s when I sent off an email to the Nystagmus Network to see if I could be of any help. Fast forward a few years and I’ve had a wonderful time volunteering and more recently as a trustee, helping the organisation provide the valuable support, awareness and breaking new ground in research for those with nystagmus.

From the day of my son’s diagnosis, we knew it would be a part of our lives from there forth. Little did we appreciate that it would also open us to a community that has been curated, nurtured and empowered by the Nystagmus Network. I would like to take this opportunity to say a big thank you, not just to the charity that makes all these things happen, but also to members young and old, with their families who engage with the charity and have shared their incredible experiences and learnings – we are stronger together and shining a greater light on this condition in our own unique ways.

Thank you for reading our story.

Harshal

People are sharing their nystagmus stories with us this Nystagmus Awareness Day so that everyone can understand what it’s like.

You can share your nystagmus story here

This is Peter’s story …

The first part of my story started shortly after the birth of our first son in 2005 when the doctor noticed his eye wobble and we were referred to Kingston Eye Hospital. A diagnosis of nystagmus was relatively quick but the confirmation of the underlying visual impairment, Congenital Stationary Night Blindness (CSNB), took much longer and was only recently finally confirmed via genetics testing (16 years later!!). The journey along the way has taken us from Kingston Eye hospital to Guys & St Thomas, Great Ormond Street and Moorfields hospitals.

The second part of my story started 3 year later when our second son was born – again the eye wobble but we knew that he had an identical condition (at least they both had playmates during the many hospital visits!!).

My story with the Nystagmus Network started with one of those long days at Kingston Eye hospital when we noticed a poster on the wall about the charity. We contacted them and shortly after attended the first of many Open Days (this one in Birmingham) where we got to learn so much about the eye condition, meet some of the amazing people who support the charity and other people with nystagmus for the first time.

The charity was a source of invaluable information including some life changing advice from the then education advocate Sam Jones. The journey continued with helping to raise money and attending more events. Then 6 years ago, I decided it was time to give something back so applied to become a trustee.

Our story will continue, both boys are currently studying exams (GCSEs and A-levels) and their journeys will take them which ever way they choose – they just need some extra support and consideration.

This Nystagmus Awareness Day we’re asking you to share your story.

You can share your nystagmus story here

This is Sue’s story …

My nystagmus story begins in 1991 when the daughter I’d always dreamt of having was born. She was perfect.

Just imagine the shock when, 6 weeks later at baby clinic, a doctor virtually leaped across the table at me and told me my perfect baby girl was blind.

She wasn’t blind, of course, but I knew there was something wrong with her eyes.

So, I went to my GP for more information. I came away with a compliment slip bearing just one word – ‘nystagmus’ – and an urgent referral to the eye hospital.

That was the longest two weeks of my life. There was no internet in 1991, so I couldn’t even google it.

At the eye hospital the diagnosis of nystagmus was confirmed and the stark pronouncement that she would never drive.

But I was more interested in the first 17 years. Would she learn to read and write, go to mainstream school, make friends?

And later, would she go to university, have a successful career? Would she find love and get married?

Luckily, I was also handed a leaflet about the Nystagmus Network, a national charity founded by a Mum just like me.

The call I made that evening to the support line literally changed my life. Over the years the Nystagmus Network has helped me learn about my daughter’s condition, how to support her and guide her through school, university, into employment and help her lead her best life.

I can tell you now that my daughter has achieved all the things I hoped she would and so much more. If only I’d known back then, maybe I wouldn’t have worried so much.

There have been so many proud parent moments, not least her wedding day earlier this year. It’s true she’ll never drive, but my son-in-law assures me that she’s an excellent navigator.

That little girl I worried might never learn to read now has a degree in philosophy and a career in communications.

She’s taught me so much about life and love and, thanks to her, I’m enjoying a late, second career, working in an organisation where I can help parents just like me and make a difference for people with nystagmus like her.

My daughter and I are still learning about nystagmus together and I’m so pleased to be able to share our story with you.

But when I’m with her, to misquote Snow Patrol, “all that I am, all that I ever was is there in her perfect eyes. They’re all I can see.”