However, we decided, after our visit to the Pioneer School for the Blind in Worcester last year, that we wanted a second opinion on Anthony's eyes. We finally got to take him to Dr Galloway in Wynberg (Cape Town) on Monday, and he tested for - and confirmed - that Anthony has something called Ocular Albinism.
This may be the first time - like it was for us - that you have ever heard of this condition, and you may be wondering what it actually is. Here is the definition from the National Organisation for Albinism and Hypopigmentation (NOAH) :
Ocular albinism in an inherited condition in which the eyes lack melanin pigment, while the skin and hair show normal or near-normal coloration.
The lack of pigment in the eyes causes various vision problems:
- Reduced visual acuity from 20/60 to 20/400 and sometimes as good as 20/25 in African-Americans,
- Nystagmus - involuntary back-and-forth movement of the eyes,
- Strabismus - crossed eyes or "lazy" eye, and
- Sensitivity to bright light and glare.
The reduced visual acuity may result in difficulty in school, such as inability to read what is written on a chalkboard except when very close, and difficulty with ball sports. It may also result in inability to drive.
With ocular albinism, the color of the iris of the eye may vary from blue to green or even brown, and sometimes darkens with age. However, when an eye doctor examines the eye by shining a light from the side of the eye, the light shines back through the iris since very little pigment is present. There may be areas of the iris which have very little pigment.
The main problem with the eye in ocular albinism is in the fovea, small area of the retina which affords acute vision. With ocular albinism, the fovea does not develop completely, presumably because melanin pigment is needed for the growth processes that normally occur before birth. Therefore the eye cannot process sharp light images. Because the fovea does not develop well, it is difficult to correct vision completely with glasses.
Another defect in ocular albinism is that nerves from the back of the eye to the brain do not follow the usually pattern of routing. From the normal eye, nerve fibers go to both sides of the brain, that is, the same side as the eye and the side opposite from the eye. From the eye with ocular albinism, more of the nerve fibers cross from the eye to the opposite side of the brain.
Basically, after giving Tony what everyone would recognise as an eye test (chart with numbers/letters), he put drops in Tony's eyes and sent us off for half an hour (good chance to get coffee and Google Oculur Albinism!). When we came back, he took photos of Anthony's eyes with a specialised camera, and the photo looked something like this:
"Those main blood vessels you see there are the main veins and arteries carrying blood to and from the heart. Do you see those other, fainter blood vessels?"
"Yes"
"Well - that's the problem - you're not supposed to!" He then proceeded to show us a photo of a normal eye, which looks something like this:
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Remarkable difference, isn't it? That coating is the pigmentation melanin, and it's what filters the light coming into your eyes. Without it, there's no light filtration.
Let me clarify that Anthony is NOT albino - that's another condition altogether. Someone who has albinism has no pigmentation in their skin, hair, eyes at all - Anthony has very strong pigmentation in his hair - that beautiful strawberry blonde colour is what some women pay thousands for every year! He has the bluest of eyes, and though his skin is very fair, it's only slightly paler than usual.
However, as stated above, this condition does lead to vision problems, and Anthony will always have glasses or contact lenses. His sight will not improve. In measuring his vision, Dr Galloway believes Tony's sight to be in the region of 50%. But the good news is, it won't get worse either. The doctor's advice was to keep him in mainstream school as long as he flourishes, but to bear in mind that it will get more difficult in the higher grades. I decided to ask a question that has been on my mind for a while, and asked if he would ever be able to drive. The doctor's reply was that he'd rather prepare us for the worst now, so that anything else is an unexpected surprise, but he believed with Anthony's level of vision, he would not ever be able to learn to drive.
So that's where we are. Does this affect Anthony? Not at all - he's the same happy-go-lucky child he always was. He'll quite happily go up to a complete stranger and announce proudly "I have a nystagmus! My eye wobbles!" Or to another (with a huge smile on his face) "I have ADHD - and so does my best friend!" That's just who he is - ain't nothing gonna break-a his stride, nobody's gonna slow him down - oh no! He's got to keep on moving!
With the amazing school he goes to and its teaching staff, nothing will change there either. He is already sitting right at the front of the class, with an angled add-on to his desk, so that he's not looking directly down and working in his own light. He works with 2B pencils, not HB, and luckily the print in his readers is big enough for him to see. He gets high marks for English, Maths and Science. He has an analytic and logical mind, so he loves the problem-solving queries he has to deal with. He soaks in information like a sponge. In short, he is more than flourishing, he's excelling.
Here's the thing. When, years ago, I was told that Anthony's nystagmus was the result of muscles not having developed properly, I got to thinking "What did I do wrong? What didn't I do?". However, on reading up on Ocular Albinism, it comes from the X-chromosome, so at conception there was a 50-50 chance that Anthony would get it. And he did, while his brother Andrew didn't (it generally affects boys more than girls). So here's the way I'm looking at it. God decreed from the moment that those cells split that Anthony would have Ocular Albinism.. Why? Because He has a massive plan for his life. "For I know the plans I have for you, says the Lord, plans to prosper you, not to harm you; plans to give you hope and a future" (Jeremiah 29:11). At this stage I don't know what Anthony's future looks like. What I do know is that it is bright. He's a super-bright child, a total science geek already, nerd deluxe - he'll take anyone on in a quiz on Doctor Who, Star Wars or Harry Potter. His Grade 1 teacher already said he will grow up to be a writer - either of fantasy novels or of computer programs. I could honestly believe that.
Did God make a mistake when Anthony was conceived? Was this just a freaky accident of nature? Not at all. I believe God was very intentional in this. In thinking about it all on Monday, the only verse that was coming into my mind was "I am fearfully and wonderfully made" (Psalm 139:14) All those intricate things that go into making Anthony who he is INCLUDED the "speed wobble" that he has, and his superdrive. He is the first to "walk across the room" and introduce himself to new people. He is not in the least bashful, and has no qualms about his conditions.
There are many challenges ahead for Anthony, and many questions that have arisen, but this I do know - this condition does not mean the end for Anthony. It is a new beginning, and one from which he will spring to entirely new levels of achievement.
Finally, if anyone does know of any support groups here in Cape Town for Ocular Albinism, and if anyone has answers for me on the legal applications (like can/should I register him as officially visually impaired, what is available to help him - physically, emotionally and financially?) then please, please get in touch with me.
Please stay tuned - I have a feeling there are going to be many chapters in this story!
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