My beautiful baby girl, Alessia arrived at 8:21pm on Monday February 19, 2007. She was beautiful; but something was way wrong, very wrong.

Alessia spent 9 weeks in the Neonatal Intensive Care Unit (NICU) of Princess Margaret Hospital (PMH). On April 27, 2007 my gorgeous little girl finally came home to be with us, her family. We were no closer to knowing what was wrong with her – there were more questions rather than answers. After 18 months (in July 2008), we finally had a diagnosis, our precious little girl has an extremely rare condition known as Pallister-Killian Syndrome (PKS). Very little is known about PKS. One thing we do know is that Alessia is a member of an “elite club” with only 12 (known) members within Australia and New Zealand. We recently met 7 of them in Sydney, where we had our very first PKS Australia Conference!!!

Fast forward a few years to 2012! Alessia is now 5 years old, she attends Christ the King School in Beaconsfield (CTK). CTK is a mainstream school with a learning centre. Alessia is now in pre-primary, she is one of 30 students in her class. Alessia attends mainly mainstream classes, but also attends the learning centre on an “as required” basis.

The school has been very supportive of Alessia’s needs. Alessia has the most caring aides who treat her as if she was their own child. Alessia has touched so many people at school. When she first attended Kindergarten in 2011, it was a very emotion filled time – this wasn’t the way it was supposed to be! She was meant to be running around the playground with her peers, making friends, playing in the sandpit and so the list goes on! But, Alessia has made so many gorgeous little friends who I know will look after her after I leave her in the mornings. Her friends are now teaching their parents how to interact with Alessia – it’s wonderful to watch. Alessia’s peers know no different to having someone with special needs amongst them.

Apart from receiving physiotherapy, occupational therapy and speech therapy from the team at Senses Foundation, Alessia also has a visiting teacher from The West Australian Institute for Deaf Education (WAIDE) visit her at school every week. Alessia has a wonderful “team” working with and for her to help her achieve all that she can. Without this support, it would be a very lonely journey.

Alessia has recently started Riding for the Disabled in Baldivis. It is all very new to her. She’s still not very keen on sitting, but is getting there. It’s definitely a milestone we see her achieving by the end of the year!

Although Alessia is non-verbal, she certainly communicates with us. She has a certain cry when she’s tired, she clenches her teeth shut when she’s had enough to eat or she wants a drink before the next mouthful of food, and best of all, she has the most gorgeous giggle when she’s happy! The other thing that Alessia really, really LOVES is bling – anything with glitter or sparkle makes this little girl happy!!

Alessia is generally a very happy little girl who has the most doting big brother (Adam) a girl could ask for, an adoring dad (Nic) and a devoted mum (Terzita).

The journey is an emotional and difficult one and it’s not going to get any easier!! There are times when everything goes so smoothly that I don’t even bat an eyelid and times when I ask myself “why” – especially when Alessia is sick just before we leave for school!!

This is my story… so far

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Published on January 6, 2016.