Master Cassius has a rare condition called Lissencephaly. It means that his brain is smooth but he is beating the odds everyday.
Wellington
Cassius was born on the 24th of November 2014 a big, beautiful bundle of rolls. We counted his fingers and toes and marvelled at his long lushious hair and we decided that he was perfect.
Little did we know that although we had done everything in our powers to make a healthy happy baby, a tiny mistake in his genes would lead to him having something called Lissencephaly.
We lived in bliss for 6 amazing months and then our little treasure started to have seizures. We were rushed from hospital to hospital not knowing what was happening while they tried to get a diagnosis. Meanwhile his seizures got so bad that he spent most of the time in a drug induced sleep.
Our baby stopped smiling and playing and doing all the things a little baby should and in the second week of our hospital stay they done a scan of his brain.
It was smooth. There were no ‘spaggetti’ bits at all and we were told that he may never walk, talk or show emotion and that he would be lucky to see his second birthday.
We were then sent home as there was no cure and told to make him ‘comfortable’. Of course our hearts were broken but since we have been home, we have seen that not only does our son show emotion, he is happy.
He smiles and laughs everyday and although he can’t walk we will carry him everywhere and anywhere he needs to go.
Although he can’t talk he is slowly showing us what he likes and dislikes. He can roll over, play and eat. In fact he eats A LOT!
We have made this page to help spread the word that no matter what the odds are you can beat them.
We are also fundraising for special equipment to help aid Cassius to reach his full potential and to take him to places that will stimulate his brain and make him happy.
Thank-you for reading about our little miracle!
Here are some of the things we are aiming to get for our wee man
http://www.fireflyfriends.com/goto-seat
http://www.fireflyfriends.com/upsee
http://www.especialneeds.com/tfh-high-backed-swing-seats.html
We are Cassius's parents and will be doing everything we can to make sure our son reaches his full potential
The Go To Seat!!! 22 February 2016
So we have been in touch with Firefly the company that make the Go-To seat. Arrrghhh turns out they don't send to NZ BUT they have said they will find a way to get one to us through one of their distributors :) SO exciting! Thank you all so far for your generosity and help xox
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