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Our Stories Archives - Smith-Magenis Syndrome Australia Archive | Smith-Magenis Syndrome Australia

Portfolio Category: Our Stories

Diezel’s Story

Diezel was diagnosed at the age of 1 and a half. Something just wasn’t right with him. Diezel still at that age was like a new born baby, he wouldn’t sit up by himself, crawl or even hold up his own bottle. A lot of tests were done to try and work out what was…
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Elsie’s Storey

During one of my routine pregnancy ultrasounds they found fluid on Elsie's brain, I remember being so confused. When she was born they did a series of tests as she looked a little different and they were trying to work out if it was because of the fluid. Six weeks later we got a call…
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Tama’s Story

Tama was born at 41 weeks and after a long labour, Tama became distressed was born via emergency surgery. He was not breathing was placed in NICU on ventilators for 48 hours. He was a perfect baby. He never cried, slept a lot and was always smiling. It wasn’t until he wasn’t reaching his milestones…
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Damien’s Story


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Damian was diagnosed at 19 months with Smith-Magenis Syndrome, after his mum realised things weren’t quite right. Damian barely slept and his development was much slower than that of children his age. Once he had his diagnosis he started therapy and my sister (his mum) and I started researching. We had no idea what Smith…
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Savannah’s Story

I had a wonderful pregnancy with little to no complications. Savannah arrived into the world 2 weeks late and after a long and hard labour, our not so little girl arrived. I've been one of the luckiest mums around with a daughter who taught me how to breastfeed from the minute she was born. Around…
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