On November 10, 1994 at 1:45 pm at Nambour General Hospital on the Sunshine Coast, I gave birth to my first child. A girl, weighing in at 7lb10. We named her Shari Annalese. I breastfed her for a full 13 months without any indication of any illness or imperfection of any kind.

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Shari 6 months, a very happy baby

It was about this time we started to notice little things about her. She still wasn't walking, saying words or clapping hands, not even a first tooth. Because she was such a happy baby and, as we thought at the time, a healthy baby, we weren't too concerned. She did finally walk at 14 months and her first tooth appeared at 15 months. But we could not get her to eat meat or any dairy products. She wouldn't even drink milk. I started her on vitamin supplements.

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Shari 2, holding her baby sister

At the age of 2 she became ill with a stomach virus and was vomiting every half hour. The doctor checked her over and told me just to keep up the fluids. It was 12 hours later that she finally ceased vomiting and became well again.

Around 2 months after this virus I noticed her beautiful curly hair became brittle and started breaking off about an inch from the root. Within a few months not one curl was left to be seen. Another doctors visit saw her getting blood tests but none could prove reason for the loss of hair. Her hair did grow back and by this time we were dealing with unexplained infections.

First it was a bladder infection and then she would get an ear infection and then an eye infection. She was on a constant diet of antibiotics so I took her to a Chinese herbalist. After one weeks dose of herbs, Shari has never had another infection.

Even though Shari seemed well again and was happy, we knew deep down that something was wrong. She was extremely clumsy and unco-ordinated, talked slowly, unattentive and was overall developing well behind her peers.

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Shari at 3 after her hair fell out

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Shari aged 5, 6 months before her diagnosis

Just before she started preschool, I enrolled her in Occupational Therapy at the hospital once a week and soon progressed to Speech Therapy sessions. But it seemed nothing or no-one could come up with any answers.

Halfway through her first preschool year the teacher suggested I have Shari's hearing tested but that too, seemed normal. Finally I took her to a Paediatrician and explained my dilemma. She took a series of blood tests and a urine specimen, which all came back normal (bar the urine specimen).

May 31st 2000 was probably the single worst day of my life. Our worst fears were confirmed with a diagnosis. Shari had inherited a rare urea-cycle disorder known as Argininsuccinic Aciduria (or Argininosccinate Lyase Deficiency). I was already 12 weeks pregnant at the time with our third child. Luckily, an amnio revealed a normal, healthy baby.

Two years on, almost to the day, I have been blessed with three beautiful girls, all were born in November and all on a Thursday! Shari was the only one born with this disorder.

Shari is currently in grade 2 and although she does struggle she is learning to read and write and thankfully has just been granted aid time in the classroom. She is doing better than I could have ever expected since taking "Arginine" supplements. She still attends speech therapy every week and has blood tests every 6 months to monitor Arginine and ammonia levels

We couldn't ask for a more beautiful and special little girl and we feel proud and privileged to be her parents.

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Shari aged 7, at school

-Jason and Delanie Butler, North Queensland, May 2002.