Before 2004, I had never heard the word "nystagmus". My third pregnancy - my "miracle baby' - was progressing very, very normally. I was eating healthily, definitely getting plenty of sleep, and preparing for this new little bundle.
In March 2004, this new little bundle - Anthony - made his way noisily and hurriedly into the world. Typical Anthony - he can't wait for anything; he was 2½ weeks early! He looked absolutely healthy, and met all his milestones. He even settled into his new creche at three months old like a trooper. But when Anthony's creche teacher said that she really felt Anthony should see an optometrist as he was behind on his milestones for sight, we were given a diagnosis that would set a course in motion that is nowhere near reaching a conclusion, but is an ongoing, exciting journey.
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| Tiny Tony beside the engine of a Boeing 747 at Rand Airport |
We had noticed that Anthony's eyes "tracked" rapidly from side to side, especially late at night when he was fighting sleep. The optometrist diagnosed this as "nystagmus". I asked what would have caused this, and she said "Oh, it could be a number of things - muscles in his eyes that didn't develop properly or that died around birth...." I spent the next eight years trying to remember every single thing I'd done, meal I'd eaten, drink I'd drank in order to work out what I had or hadn't done that I shouldn't have or should have. I needed to be able to warn people not to make the same mistake. To no avail - it was like looking for a needle, not in a haystack, but in a complete warehouse of hay.
Despite his eye movements, he grew perfectly, and was doing so well in every other way. The signs of his ADHD were already appearing, but he was such a little character - our very own Duracell bunny - that we didn't think anything of it. Yes, he was busy, but we didn't see it as a problem. It just would have been nice if he'd slept before 11 when he was little!
At age 5, Anthony got his first pair of glasses. The opthalmologist at the time told us how bad his eyes were, and also recommended that he see a specialist to give him exercises for his eyes. We went to her for a while but it didn't seem to make any difference.
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| Tony and his sister Cath on his first day of school |
Anthony started school just before his 7th birthday. From day one, he was sold - this was the best thing that had happened in his life, as far as he was concerned. Seriously, of my three children, he's the only one that frets during the holidays because he is missing maths lessons! He had an amazing teacher in grade 1, and as the daughter-in-law of an ophthalmologist, she recognised that there was a major problem. She asked me to go back to Anthony's ophthalmologist and get him retested. I did, and got much of the same story. He went back to the eye specialist, and she delivered the blow that Tony's eyesight problems in the classroom were definitely because of the nystagmus, that there was nothing she could do, or that any specialist or surgeon could do, and then she added "Try to keep him in mainstream schools for as long as you can, but if I were you, I'd start exploring other options". I went home dejected, dispirited and despondent.
The one thing our family does have is wonderful people around us who support us, and one such person was waiting at home - my daughter's best friend. We were chatting about the prognosis, and she said "Mom, Tony's going to be fine at Summies (Somerset West Primary). You know they will go out of their way to accommodate Anthony. After Grade 7 - well, we can take that when we get to it. Who knows what technology will be available? But even if you work very closely with the teachers, and enlarge the sections of the textbooks they will be dealing with on that day, he'll be fine, and he'll get through it." So wise for her 19 years! It was just the pragmatic talking-to I needed to spur me back into moving forward.
Anthony's teacher continued to be full of patience with him, and was always looking for things she could do to make his life easier. She had him sitting right at the front of the class and she helped him with giving him paper to copy from, rather than him having to read the blackboard. She also arranged a field trip to the Pioneer School for the Blind and Visually Impaired in Worcester (Western Cape), where she hoped to pick up classroom tips to help him. He was seen by a nursing sister and a social worker. On giving him a brief eye test, the nursing sister's first comment to us was "please get a second opinion on this child's distance vision". We got some great advice that day and found some excellent things to do to help in the classroom.
It took us a year to get that second opinion, but get it we did, and this ophthalmologist, who is a specialist in paediatric ophthalmology, literally took one look at Anthony and said "have you tested this child for Ocular Albinism?" Well, as we'd never heard of it, clearly we hadn't, so he organised the test - a few drops in the eye so that it could be looked at through a special camera - to confirm his diagnosis. He first did all the distance vision tests, and normal eyesight tests. We then had a "coffee break" to allow the drops to work their magic, and also for us to Google "ocular albinism".
40 minutes later, and a couple of photographs, the confirmation was there - Anthony does indeed have ocular albinism. Basically, his eyes do not have melanin in them, so they can't filter light like normal eyes. One of the symptoms of ocular albinism is nystagmus. The doctor confirmed that Anthony has only 50% vision, and the chances of him ever driving a car are absolutely minimal. He gave us some practical advice for the classroom, and for outdoors (lots of sunscreen, cricket hat as opposed to baseball cap, the darker the pencil the better) and prescribed Anthony some new spectacles which not only saw to his distance vision but were photochromic (went dark in sunlight) to help with his light filtration issues. He also left us with a bittersweet thought: "Yes, his eyes are bad, and they're not going to get better, but I can assure you they also won't get any worse."
But here was the big thing for me - for eight years I'd beaten myself up trying to work out what went wrong during pregnancy or birth, and yet this doctor's diagnosis had proved that Anthony's condition wasn't an "event" - it was all part of his genetic make-up, decreed in those very first cells of life, just as much as his blue eyes and his strawberry blond hair. From the moment of conception, nothing I could have done or shouldn't have done would have made a difference to Anthony's sight. I cannot describe how much of a release that was for me.
In this story, the biggest challenges Anthony faces are due to his nystagmus and his battle to visually focus on items (his inability to mentally focus is due to ADHD, but that's another story). Despite that, and all his vision issues, he continues to get great marks in English and Maths. We continue to learn along with his teachers how best to teach him in the classroom, and we've implemented a lot. I've been to visit various organisations and been given advice by them as to how we can help Anthony in simple, everyday ways. More than all of that, though, we've been able to educate people and explain why he battles to identify people, places, figures, objects, and more importantly, words on any screen. I've had to explain why photocopies are often a bad option for him, why he can't share a book, why he should use 2B pencils instead of HB. And I'm sure as time goes on, there will be new things teachers will let me know have worked in the classroom, and there will be new methods I will be able to show teachers. Who says you can't teach old dogs new tricks???
"What Can I See" - a short clip as to what people with albinism, ocular albinism and nystagmus see every day
After discovering Anthony had ocular albinism, I sought to find a support group for either this or nystagmus in South Africa. I had hundreds of questions. The more I sought, the more I saw that there did not seem to be such an organisation. By the end of the year and much searching, a number of people said to me personally, or via social media "Maybe you need to be the one to start it". There isn't an awareness of nystagmus in South Africa, or indeed most of the world.
Which brings me (finally!) to the point of this blog post. This year, for the first time ever, today (6th November) marks the international nystagmus awareness day which for 2013 is being known as "Wobbly Wednesday". Nystgamus Network in the UK have taken this very seriously, and many "Nystagmus Mums" (or dads), and those who battle daily with nystagmus, are speaking on local radio stations, talking in schools and hospitals, or giving interviews to newspapers about living with nystagmus and the challenges that they face every day. As a condition suffered by 1 in every thousand, in South Africa, we can expect statistically that 51 700 people would have nystagmus.
There is no treatment for nystagmus, no operation, no magic pill. It may stabilise as children get older, contact lenses may help, but it will never go away. But it's far from a life sentence, or a hindrance. Don't believe me? Ask Sir James Galway. Or Kenny Rogers. Or Pruitt Taylor Vince. Or Apl.de.Ap - they all have nystagmus. Or ask Anthony, who will simply tell you "my eyes wobble!" before running off to start a game of Marvel Superheroes or Star Wars with his friends.
If you have nystagmus, or have a family member with nystagmus, or if you are an educational or medical professional dealing with the eye condition, please go to and "like" the Nystagmus Support SA Facebook page. And please spread the word! Nystagmus isn't a life sentence - it's an adjustment to everyday life.
