24/09/1992

So I just googled 1992 and did you know there was a hurricane (Iniki) in Hawaii? Did you also know that American singer Nick Jonas was born? Oh and how cool is this, Rigoberta Menchu won the Noble Peace Prize for Peace. And oh mi gosh! Did you know that Australian female-ist Nikki Lee was born??

Um, who’s that?

Aaaaanyways, I was born on the 24th of September 1992 and unlike everywhere else it was a spring day in Australia. Even though there were no problems before I was born, the problem came after I was born. It started with jaundice. Now, usually when a baby is born he or she has jaundice but eventually it will go away, for me though, it never left (not until when I had a liver transplant in 2006). So jaundice was the start of, well, everything. I was referred to the Royal Children’s hospital and there the doctors and the nurses did many tests on me. Finally, when they knew what the problem was they told my parents and right there and then I was diagnosed with Alagille Syndrome.

For me, Alagille Syndrome affects my liver (cirrhosis), my heart (pulmonary stenosis), my vision (what’s that condition called when you have scarring at the back of your right eye?), my hearing (keratosis obturans), my bones (rickets), my growth (caused by rickets), my learning pace and my speed in general.

There was a period of time when I was little and needed a feeding tube to go through my stomach. The nutrients wasn’t going into my body very well when eating and so my mum had to feed me through the tube. At night when I pull out my tube (don’t blame me I was just a baby) my mum had to wake up and drive us to the emergency at the Children’s hospital.

My Vision

Besides my terrible peripheral vision and the scarring on my right eye, my right eye is also the eye that is lazy (lazy eye). I also have night blindness and sometimes during the day I have trouble seeing the world clearly. For example, if there was a step and if it was the same colour as the ground I wouldn’t be able to see the step. Another example is a lot of times I will miss someone that I know when he or she walks pass or towards me. 1) I didn’t recognise them, because of my vision and 2) I didn’t see them walking pass me.

lazyeye
spot the lazy eye

What’s a lazy eye you ask. Well, lazy eye dot org says it is when the brain does not fully acknowledge the images seen by the amblyopic eye (lazy eye). The amblyopic eye wanders around or does not cooperate with the other eye (as you can see in the picture).

My Hearing

I find it hard to hear one person talking when I am in a room full of noise or people. I also find it hard to hear to one person even when I’m in a quiet room (depending on how loud/soft he or she is talking). And during these times when I find it hard to hear I make sure to wear my hearing aids.

hearing
hearing test from Australian Hearing

 

My Growth

One time when I was little my parents thought I was going to be a midget, because I literally wasn’t growing at all. i was short, I was small, I was tiny and I was little. Today, if you were to meet me you would never guess my age (the lady on the train thought I was 13 or something when in fact I was 20 over. Don’t worey I wasn’t angry at all). I’m still short, still small, still tiny and still little (for a 20 over year old female).

My Learning Pace/My Speed

A good example is when I was in primary and secondary school. I remember needing extra support from my visiting teacher in all my subjects. And sometimes I was given more time to complete my assignments. Even now, I need more time to work on my assignments, read my textbook, write my essays etc. According to my neuropsychology report I am 4x slower than an average person, not only in my studies but also in the things I do in general. If you’re a very patient person you’re my friend!

 

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