James' Story
- By James

Hi. My name is James.

I was born in Ipswich, Queensland on the 2nd of July 1988.  At this time the doctors found I had a serious heart condition but none of the doctors could find the reason why.  I was taken to the Prince Charles Hospital at Chermside where they operated on me when I was just 4 days old.

I had a shunt put into my left shoulder which unfortunately failed, so they tried this again when I was twelve days old. I was transferred to the Mater Children’s Hospital for tests to find out what was so wrong with me.  At this point I had no swallow reflex so I had many tubes coming out of lots of places. Then another ambulance ride back to Ipswich Hospital where my parents asked the doctors about a peg feed set up.  The doctors said it was a risky procedure and I did not have a high survival rating at that point.  So, they decided not to go ahead with it.

Some days later while my dad was at work one night he heard on the radio how a child in Sydney fell off his motorbike and received medical attention from the Camperdown Children’s Hospital.  So my dad got into contact with them as quickly as possible, at which point he told them he was from Glenn Innes NSW.   The Camperdown Hospital offered their expertise and my father drove me all the way to Sydney where they found out why I could not swallow.  So they told my parents to bring me back in two weeks and they would operate on me.

After my opp they told my parents that I would be able to eat by the time I was 3 years old., and I was.

Then one year later, my baby sister was born.  I was 4 by this time.  A few years later we moved to Newcastle which is 2 hours from Sydney and we were there for three years.

In 1996 I went to the John Hunter Hospital where they told my mum I had Kabuki Syndrome.  It was a very rare condition at the time and there were only 89 officially diagnosed cases of Kabuki in the world. This was the beginning of my Kabuki Journey and finally Mum and Dad had some answers about what had been going on with me since I was a baby.

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