In May 2009, our daughter Jovie was born in Sydney Australia.

Like many people, we were completely unaware of Rett syndrome until we started seeing the early signs of the disorder around the time Jovie was 10-12 months old.

Making notes with our general practitioner at the regular health checks that all children have in their first year, I noticed there was something a little bit different to what I had observed with my first child and decided that I couldn’t ignore it. We were very lucky to have a family friend who is a paediatrician in the US, and it was she that first brought up Rett syndrome with me. By chance, I happened to see a segment on The View, a American television program which featured Anna, a young girl with Rett syndrome. It really hit home to me, not only Anna and her family’s story – but also that I was seeing so many parallels between our daughters.

Almost a year later in June 2012, after being referred to the Children’s Hospital in Sydney, undergoing blood tests, urine test, magnetic resonance imaging, electroencephalogram, electrocardiogram and a DNA test, Jovie was diagnosed with Rett syndrome.

For Jovie, Rett syndrome has taken away her ability to communicate, speak, use her hands, climb, jump and kick. She will hyperventilate, grind her teeth, hold her breath and swallow air throughout the day. We are very grateful that Jovie learnt how to walk at 13 months and has kept that skill going.

The diagnosis was a confirmation of what we had been thinking that past year. As a family, we have come together to support not only Jovie but each other. We have started to complete fundraising events in Sydney, raising money for Rett syndrome research in Australia.

Jovie attended an autism-specific day care centre before starting kindergarten in 2014. She is now a big sister to a little brother and is loving every second of it!

We are blessed to have such a beautiful and happy little girl in our lives and hope that our story will inspire other families.

Our website is

Tracey (Jovie’s mum)
July 2013

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RETT Syndrome Association of Australia