Sunday 29 April 2012

The Beginning.


Hey,
My name is Brett, I'm sixteen years old and I live in Stonewall, Manitoba.


Five months ago I was sitting in histiory class trying to read notes but having more troubles than usual. Our teacher, Mr. Morris, usually prints all his notes out by hand and I couldnt seem to focus on the words properly. The projecter was really blurry and it was making me angry because just two days earlier I could read it without struggle. I was worried so at lunch I walked to the eye clinic in town and booked an appointment for 2:20 pm, so they wrote me a note to give to the teacher.In physics I gave Mr.Morris the note headed back to the clinic. When I got there I had to do the initial tests, but I couldn't even see the little balloon at the end of the road in the machine.

Once I got in the room with Dr.Dunford she did all the tests after I told her what was up and I failed them all. I couldn't see the large E on the top of the chart,... well in this case the wall projecter. At this point she was on the phone with my mom telling her this is not small, this is big... this is serious. She told us to go see Dr.Dookeran who is a eye specialist .Dr.Dunford was proud of me for being responsible and coming on my own when I knew something was wrong. When she checked out my eyes she said they look normal. I didn't know what to think.

Dr.Dookeran put me through different tests and I passed them all except one . He also said my eyes look fine. He told me and my mom to go see another specialist and took 3-4 vials of blood. On to the next specialist, Dr.Rahman (or something like that).The building was really modern looking on the inside. She did the same thing that was tested on me before,  she looked at my eyes and said they look fine too. I was starting to get really worried. She then scheduled me to see a neurologist to get an MRI and to see a different specialist, Dr.Clark . I saw him 2 or 3 times before I had the MRI and he took blood every time. They were testing me for all sorts of things. I hate needles for the record. He also did the same tests that the other specialist did and checked my eyes, still he said they looked fine.

By now with all the tests we have ruled out alot of things including Glaucoma, so that was a relief. Dr.Clark was taking special interest in my situation because they had no idea why I was going blind and they knew I have a nystagmus, but it has nothing to do with my sight it just makes it difficult for the doctors to look in my eyes. It also made me a prime subject for something to pick on when I was in grade one (haha) . The nystagmus is a mutation in my dna code. Having that alone is rare.

The nerolagist did different tests more physical ones, he would poke my arm with a paper clip and with his finger to see if I could tell the difference between the two, like if the message was getting from my sense of feel to my brain. His tests were more oldschool and I passed them all easily, concluding that it probably wasnt in my brain. He also made me get blood drawn . I then had a regular doctors appointment and she wanted to also test me for things so that ment more blood work and this one was testing for mono. By the end of this I was surprised that I'm not anemic. The test came back negative for mono.

Then I went for the MRI , the nurse had told me that I need an IV, which I really didn't want, so we argued for a bit until I finally agreed. The MRI was incunclusive, my brain was good and tumar free so that ruled out yet another thing. I saw Dr.Clark a few more times getting bloodwork each time ruling out more and more things. The last test I did was a DNA test checking for something called Leber's which is very rare (only 5,000 people in the states have it out of 3.8 million). Leber's is also a mutation with the dna. They said that the chances of me getting 2 mutations with codes in my DNA were too low . The test was only supposed to take 6-8 weeks. 12 weeks later we finally got the results back my parents got the results on the wednesday of spring break and told me on the monday after so they didnt ruin my spring break.

The test results came back positive for Leber's... I have 2 mutations with my DNA codes. They said wouldn't happen so that makes me 1 in 5 billion. Yeah, those are my statistics. :) That also means im going to be blind forever :( .

I'm trying to live life to the fullest, I love to skateboard and have been skating since I was 6. I wanted to be an electrition, plumber or in heating and a/c but I dont know many people that would hire a blind electrition :P. I used to be a pretty good at drawing. I loved to drive. But just because I'm blind doesn't mean I'm going to stop trying.(except the driving part I hope!)  I still skate, I'm starting a clothing line called T.B.K. ( The blind kid). I'm going to start with just a dollar from every shirt. The proceeds will be donated to a fondation supporting the visually impared. I'm just not sure which one yet if I'm going to make a charity or find a good thing to donate to like buying an ipad for a visually impaired person who needs it . Ten people from my moms work came together and gave me $850 for me to get an ipad and it helps so much with school. It is what I'm writing this on right now. Not every blog will be this long, don't worry. (haha) I'll keep you up to date. If you actually read all of that I appriciate it.

"__"  T.B.K. Brett.


[edited by Bella ]

5 comments:

  1. Hey Brett: You are a very courageous kid, love that you are sharing your experiences - I am sure many will learn from you!
    Ingrid

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  2. Brett, you are awesome. I have been keeping up through your Grandma.
    We all think of you and are praying for you as learn to live in this new world.
    Uncle Bob

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  4. Hi Brett, I wanted to rewrite my comment. First, thank you for sharing your experience. Second, you are indeed brave and determined.

    Third, as someone who experienced sudden vision problems myself last year, I can really relate to your story, although I was lucky and came out with my vision intact, for now.

    All the best to you, and here is to your continuing determination. I'm going to look into your clothing line!

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  5. Pfft well I take it that "not driving" thing didn't work out! Watch out for brett driving the golf cart! Haha

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