From 10% to a huge 80% in two and a bit years!

So many of us take sight for granted, even I had no clear concept of what it would be like to be vision impaired. I never in my dreams thought that one of our children would be severely impaired.

We had no suspicions about Nathanael’s reluctance to stand and walk. He was small, very timid and his twin sister would take over and do things for him. He was a bit unsteady on his feet and much prefered to be crawling around. He would get a fright if someone approached him from the left but not any other time. He had great difficulty climbing the stairs, going down was an absolute nightmare. He couldn’t catch a ball, he wouldn’t climb a chair and riding a trike, well that was a no-go outside.

Because the two older boys were seeing an eye doctor anyway we arranged to have Nathanael and Siobhan checked one day as well. The dry eye was the reason for Nathanael’s visit, Siobhan was the one I was concerned about as her eye kept turning in.

Well, we went to the appointment and Nathanael sat in the huge chair, right eye covered, looking at a huge duck silhouette opposite and shaking his head. “What is the shape sweety?” I prompted after the Dr tried unsuccessfully to get him to answer. Nathanael was straining forward in the seat now, trying to look around his cover over the right eye. After a while he said:” I don’t know mummy. It’s too hard”
I looked at the Doctor, the Doctor looked at me and he removed the patch from Nathanael’s right eye. “Ah! It’s a duckie!” he exclaimed, smiling. My heart fell into my lap. What is the matter with his eyes? He has been doing so well, not bumping into anything…..well, only not bumping into things when it had been there for a long time. Oh no!

The results of the eye measurement was +4 in the right eye and +6 in the left. I still don’t know what it all means but I do know it started a wave of adjustments and, well, not much else. He was so good with eye drops and wearing his glasses every now and again that I didn’t really get too worried.  We had instruction to patch his right eye for a few hours when we could and to keep up the appointments every 4 months.

What I gleaned was that because his left eye was so weak it never had to work and recognise anything so the brain couldn’t interpret what it was seeing because the right eye could make it out.

I didn’t know though, that his right eye was severely impaired as well and that he needed glasses to see properly even through that eye. He compensated so well, it really wasn’t too apparent until he started school and he had trouble learning to read.

With great patience and a wonderfully written letter to the Teacher, the eye doctor arranged for Nathanael to have his right eye covered for 2 hours every school day during the close work in class. The combination of the patch and his glasses helped his brain rewire and start to see what he was looking at.

This was continued into this year and about a month ago we went to see the ophthalmologist again. Nathanael did so well! He was able to read the letters right down to the 6th row he put up. Again, I didn’t delve too deep into the technical things but he was reading things I had difficulty seeing and that was spectacular.  When the Dr turned to me and said:” He has come from 10% vision to 80% vision, I am afraid that is about the best we can do for him” I almost cried. He was apologising for not getting him to 100% yet having him at even 50% was such a fantastic feeling. I turned around and told him that he didn’t have to say sorry for falling 20% short, I was overwhelmed we made it to 70% more than he ever had.

The next moment I remember feeling an overwhelming shock. I had the “what if” moment of my days. What if we didn’t have children with HED? What if they didn’t have dry eyes? What if we never took Nathanael to the eye doctor at 4 years old? He would not have been picked up until the school raised concerns about his reading. Then it would have been too late to save anything. We would have a legally blind son…..What a blessing Hypohidrotic Ectodermal Dysplasia turned out to be for Nathanael. His eyesight was inherited from his father and had nothing to do with HED.
Our little man came from 10% to 80% in two and a bit years and we are very proud of him!

With love and support,

Tarja

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4 Responses to “From 10% to a huge 80% in two and a bit years!”


  1. 1 Lynelle Astillero 06/08/2012 at 11:11 pm

    It is very difficult to find a very good eye doctor that is not charging very high professional fee. There are many good eye doctors on government hospitals that charges a minimal fee though. `*:’`

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    • 2 tarjakelly 08/08/2012 at 7:53 am

      We have been very fortunate in this instance as Nathanael has a health care card from Centerlink and the eye specialist bulk bills his visits. The only times I have had to pay was when there was a dispute with the referral letter from the GP.

  2. 3 Roxann Anzualda 05/03/2013 at 3:11 am

    Optometrists are ODs – they have medical training but are not physicians. They’re trained in diagnosing and treating many eye-related diseases. They’re more likely to focus on routine eye care and vision testing for glasses or contacts…

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    • 4 tarjakelly 02/06/2013 at 2:43 pm

      Ophthalmology is the branch of medicine that deals with the anatomy, physiology and diseases of the eye. An ophthalmologist is a specialist in medical and surgical eye problems. Since ophthalmologists perform operations on eyes, they are both surgical and medical specialists. We called them Eye Doctors for the children so they could explain it to others, they actually saw the ophthalmologist.


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