A nystagmus Dad writes:
Michael is 19. In 1999 he was diagnosed with congenital idiopathic nystagmus at around 3 months of age. We immediately did an internet search to find out what nystagmus was. I couldn’t even spell it properly, but within a short time we found Nystagmus Network. This turned out to be a huge benefit to us. We were put in touch with people with first hand knowledge of the condition. I’ve still got my notes from my initial conversations with Katy and Claire and the messages we received from John, Sue, Vivien and all the team after becoming members were most reassuring. We attended Open Days and our understanding grew. In terms of raising awareness and helping us come to terms with it, Nystagmus Network really hit the mark.
It was through the charity that we learned of Professor Irene Gottlobb and her team at Leicester Royal Infirmary. We secured a referral and Michael had countless eye recordings with Rebecca McLean, tests, clinical visits and an operation to partially correct his null point.
As Michael grew up we noticed how little his condition seemed to affect him. He was always a good athlete, playing junior football from age 5, was in the Cubs and Scouts. He swam competitively. Nystagmus didn’t seem to hamper him. However, looking back, this was masked by his ability to adapt. He struggled with fast moving ball games like cricket and badminton and the concentration required when reading. Doing his school work greatly fatigued him and studying still does. All through his school years he received terrific support from his SENCo, who became a real support for his Mum and me. We cannot thank Marie enough for her support for Michael during his time at junior and senior school.
We were all so proud of Michael when he achieved stellar results for his GCSEs and then his A-levels. In 2017 he was accepted by St. John’s College, Oxford where he is just finishing the first year of his Physics degree. He thoroughly enjoys being at Oxford, plays football for the college and fully participates in all the ‘liquid’ social events intrinsic to college life.
Michael’s success is due in no small part to the dedication and hard work he puts in, which takes a lot of effort due to his nystagmus. He has natural ability and great focus (no pun intended) and this has enabled him to overcome his disadvantages. The extra time during exams was essential to him at school and now at Oxford. He has been lucky. His condition could have been far more severe, but he has worked within his limitations to achieve the best he can. Long may it continue.
He passed his driving test in 2017 – which was the one thing we always wondered about. He has to be careful driving at night and he will never be a racing driver, but as long as he can get from A to B safely, to enable him to get on with his life, that’s all we can ask for.
I hope others may find some inspiration in Michael’s story. He has had to accommodate a severe disadvantage, but, essentially, it hasn’t held him back. He has exceeded all our expectations. The measure of that is not a place at university, but that he has simply got on with it and done his best.
