Jac is running a 2.5k fun run this month to raise awareness of nystagmus and fundraise for the Nystagmus Network. His Mum and Dad didn’t find out Jac had nystagmus till he was 3 years old and always tell him he can do anything he wants. We’re sure Jac will achieve great things!
You can sponsor Jac’s run here.
Ben’s Mum tells us:
“I am incredibly proud of my son, Ben who is 10 and has nystagmus. He plays for the under 10s Winslow Tigers football team. Recently he scored a hat trick and received the Man of the Match Trophy. He has to work twice as hard as his friends, as he hasn’t quite mastered contact lenses and doesn’t want to wear sports goggles.
We never imagined he would ever experience being part of a sports team, but not only is he a great team player, he also has great skill.”
Rocco is 6 years old. He has Ocular Albinism and nystagmus, he also has other disabilities, but, for the first time in his life, his parents have got a report saying he was age appropriate at reading. They are totally thrilled because they never thought he’d read.
Well done, Rocco!
Vicky is a nystagmus Mum who came up with a really different way to raise awareness of nystagmus in the run up to Nystagmus Awareness Day on 20 June.
She tells us:
“Here are some rocks I’ve painted as part of the “Rocks of Swindon” project about hiding and finding rocks around Swindon. I thought this would be a great way to raise awareness of Nystagmus. My 4 year old son was born with Nystagmus in one eye. Not a lot of people know what it is or have ever heard of it so hopefully this will help spread the word!”
It certainly will help raise awareness. What a brilliant idea!
Rylan’s Mum says:
“My son Rylan was only diagnosed with nystagmus in Reception at school, although I had always noticed his eyes swinging from side to side.
He is just turned six and is the first free reader in his class! We are so proud as we know scanning the words isn’t easy for him and he gets very tired after a while.
He is amazing though!”
We think so, too! Well done, Rylan!
My son Alfie who is almost 10 has never let anything stand in his way despite now being blind in one eye and having Nystagmus. Alfie persevered in learning how to ride his bike last year and got one for his 9th Birthday. He is going to be sitting the 11+ this September because he is determined to get a place at Grammar School. He has just been on his third skiing holiday and was told by his instructor that he should start training to become a Paralympian!
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.
Hello, my name is Charlotte and I am mother to a ridiculously delicious six year old girl named Scarlett. In every way Scarlett is a picture of happiness and joy. She needs very little to keep that big smile spread firmly across her angelic face, literally affection and biscuits will do the trick! I am very proud and also very lucky to have Scarlett in my life. Each day she is just a mass of love and giggles, always with a song to sing.
Scarlett, despite being pleased by the simple things in life, is medically very complex. Diagnosed at four and a half months with Optic Nerve Hypoplasia, Scarlett has no useful vision. When she was first born I do recall the frequent movement of her eyes. I also remember telling myself it is because she is curious, she is taking in the world, or whatever subject was trying to grab her attention,but this just didn’t quite cut it. I told myself that for many weeks, until one day yet another person highlighting the fact that Scarlett’s eyes never really fixed on anything and constantly danced around became too much to ignore. I took her to Bolton Eye Hospital for further investigation. We were told that her eyes moved around due to Nystagmus and that her sight was affected due to an under development in her optic nerve and that perhaps her sight may improve slightly, but I was relieved to find it would not deteriorate any further. Due to Scarlett’s age we did not know what sight she had, if any.
As she has grown older, Scarlett has given us no indication that she has any sight. She has additional needs which affect her social interaction and communication and her learning. Therefore, she has yet to confirm if she sees anything through her big blue bouncers. I suppose I have become accustomed now to the unknown: whether she can see, whether she can talk, whether she will ever function cognitively at a level appropriate for her age. Of course I get asked, by family, other children and strangers. I have also become accustomed to saying ‘I don’t know’.
Despite the complexity of my daughter and the gorgeous enigma that she is, I can say one thing for sure that she is truly happy. She has no awareness that she is any different and exists within a beautiful bubble all of her own.
Through being the parent of such a special little girl I have been on lots of adventures! My involvement and my full time job is running the online support and information network for charity VICTA Children.
Throughscarlettseyes.com was born out of my desire to want to help and seek support from families who were also raising visually impaired children. The network/community has been live now for three and a half years and continues to grow every day. Not only do I share my own personal experiences about Scarlett, but I offer an online platform to parents, carers, professionals, charities and organisations and people with a visual impairment to publish anything they wish! This has been a great experience for me and I have met many fantastic people along the way, people who have helped during the hard times, inspired when you feel like you are standing still, been a shoulder to cry on and I’ve heard some exceptional stories from which I have found such strength.
I have learnt that you might not always know what the future may hold, but that’s okay as no matter what plans you lay or expectations you have, you only have this one moment and you need to keep pushing to make it the best moment yet.
We wanted to begin 2017 by sharing a good news story by Meg Tatton which we hope will inspire other parents and show that there should be no barriers in the classroom.
Meg’s ten year old daughter, Lily, has recently passed an entrance exam and won an academic scholarship thanks to the support she received from Nystagmus Network Trustee and Education Advocate, Frances Lilly and Rory Cobb of the RNIB.
When Meg first approached the school and the QTVI, there seemed to be little advice or information available about adaptations and support for Lily to take the test. Could it be that some teachers do not expect children with a visual impairment to have aspirations to become academic high flyers?
What began as a two paragraph note from the QTVI about, among other things, blowing up the test papers on to A3 paper, ended as a four page document of detailed instructions on how different parts of the examination, including a multiple choice test on the computer, could be adapted and made accessible for Lily, in particular being printed on manageable A4 pages, giving her an equal opportunity to succeed alongside her fully sighted class mates.
“The opportunity to discuss the exam with Frances and Rory was invaluable. I could voice my concerns and they helped me to identify issues and offer suggestions/solutions to the school. It also gave me the determination to make sure that Lily had an equal chance when sitting the exam.” – Megan
Lily is a confident girl and was not sure that she would need the 25% additional time she was entitled to. This is not uncommon among VI students who do not want to appear to their friends to have any kind of special need. Like many other parents, however, Meg managed to convince Lily that the time could be very useful to her and could be used to check her answers and make sure she had not missed out any questions.
On the day of the test Lily triumphed. There was a slight hitch with the computer screen and Lily admits that she may have had to guess the answers to a couple of the multiple choice questions, but she passed. This ambitious young lady is now set on a path of high academic achievement thanks to her Mum, the RNIB and the Nystagmus Network.
If you or your child have a similar experience to Lily and Megan, or would like to share a story with the nystagmus community please get in touch with us!
My daughter has congenital idiopathic nystagmus. Idiopathic means that despite having every test available no physiological cause can be found. Congenital means that it was either present at birth or very early on in life.
I think I can pinpoint the day her nystagmus arrived. Lying on the rug in the picture above she is 6 weeks old. She stares straight into the camera and at this age she was already tracking the flowers in the garden wafting in the breeze above her head.
Yet at her very next baby clinic check up a few weeks later her eye movements and lack of control of her direction of gaze were already so pronounced that the doctor panicked and told me she thought my baby was blind.
We were given an appointment at the ophthalmic hospital and the rest is history: a diagnosis, marking the beginning of a lifelong journey where we didn’t know what the destination would be.
“I think I can pinpoint the day her nystagmus arrived.”
So what happened? I really don’t know and can never be certain, but my calm, contented baby girl suddenly became fractious and agitated and couldn’t be pacified on one particular day.
She was just 9.5 weeks old. We had gone to the zoo as a treat for her big brother. It was a very bright sunny day. It soon became clear that my daughter was not enjoying the trip. She started to scream and couldn’t calm down. She wouldn’t feed. She wouldn’t be cuddled. She couldn’t settle in her buggy or even in the car on the way home.
When we got home we bathed her, but she was still screaming. We tried to feed her, but still she screamed. We put her in her cot and closed the curtains against the bright sun and finally she slept, exhausted. From that day on her eyes were never the same. She was calm again, but the nystagmus was there, manifesting itself with wide, sweeping eye movements and a marked head turn evident as soon as she began to sit up.
What happened to cause the nystagmus or was it there all along? Could it really just have been a reaction to that bright sunshine? What switched inside my little girl’s brain? Is this really how her nystagmus started or just the way I remember it? So many unanswered questions, even today. And that journey to the unknown destination? We’re still on it … together.
My beautiful baby girl is now a gorgeous, happy, successful and charming young woman. OK, so I’m biased! But she certainly never lets nystagmus get in her way.
The shock of being told that there is something wrong with your child’s eyesight never goes away. Because every case of nystagmus is different, it’s difficult for the medical profession to give a truly accurate prognosis. Left with more questions than answers, parents sometimes flounder with only one option: wait and see.
So where can anxious parents turn for help and support? In my case it was the Nystagmus Network. Their Facebook page makes it possible to communicate with the whole nystagmus community. There’s also a whole army of nystagmus ambassadors out there in the blogosphere: articulate young people who tell it like it is. Writing for their peers their words bring invaluable hope and understanding to parents, too.
So, parents, make use of all the resources, literally at your fingertips. We’re all on the same journey and we will get there. We don’t just have to wait and see any more.
“We’re all on the same journey and we will get there.”
