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Kate’s Story

I’ve always been blessed with an optimistic nature and sailed through life seemingly unscathed by anything, yet with the birth of Amy in October 2000, even my optimism was challenged.

No one can prepare you for the shock of a complicated pregnancy and birth. As a healthy 28-year-old in a low-risk category, all seemed fine. At 6 months it became clear that all was not well and after a month of waiting, Amy was delivered prematurely, and the journey began. There was no clear diagnosis at the time, and we were told to wait and see.

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She was a tiny wee thing, yet surprisingly strong and she had a will to survive from the first moment that was unmistakable. She came home with us, after a stay in the special care nursery, at only 1.5kg and I was with her day and night, taking care of her every need. I think at the time, I was in denial and thought that a mother’s love can heal all. I hoped that she would catch up and grow and that all would be OK, but as the months and years went on, she fell further behind. It took us 5 years to receive her diagnosis of a rare genetic disorder called Rubinstein-Taybi Syndrome.

When Amy was 8 months old, I had to return to my job in a US-based IT firm, managing a sales team for Australia and NZ. It was a demanding job and required my full focus and long hours to do it justice. After a while, it became clear to me that I could not do the job well and be the mother that I wanted to be and that Amy needed.

Our life was becoming increasingly isolated as Amy’s difficulties grew. Everyday activities that we took for granted were not so simple anymore. Going shopping or spending time with friends who had kids was difficult as Amy would get into trouble with inappropriate behaviour and although people were nice about it, apart from the very few, it was clear that they were uncomfortable. In the end I felt I was squeezed out of my job and found myself at home full-time with Amy.