We had our special little guy in Feb 2022 and it has been a wild ride since then!
From a severe regression at 7-8 months old,
We have been told several times that they suspected Oli had a life ending illness or degenerative condition to have it then proven wrong by genetic testing and countless horrible invasive tests!
1. Brain tumour
2. Neuroblastoma kidney cancer
3 Angelman Sydnrome
4 Ataxia Telangiectasia
5 Friedreichs ataxia
6. Spinocerebellar ataxia’s
Are just a few of the things that our little boy has been tested for and thankfully doesn’t have.
However we are still left with no diagnosis/root cause and a mother(me!) who can’t and won’t rest until I have an answer for my little dude!
Oli has now been diagnosed with Ataxic Cerebral Palsy which he wasn’t born with. We are currently going through board approvals to undergo further genomic testing (more in depth genetic testing) to find the cause of why this has happened!
Our Neurologist (amazing man) has never had a case like Oli’s and thankfully is as gung ho as I am to find an answer!
In the meantime Oli has been classed as a “stable” case and is proving the medical professionals wrong one by one doing all the things they thought he may never do!
Oli can now sit unassisted, he can eat food
(yes it’s a very beige diet but still food😆)
He can crawl and pull himself up and rest on his knees ! I know it doesn’t sound like much for a 3 year old but in Oli’s world these are massive achievements that he, his therapists and I have worked so hard to achieve! One day 🤞🏻 this gorgeous little man of mine will take unassisted steps and say mama !
I will be hosting my Bake it Blue morning tea on Sunday the 17th of August.
Please come along have some morning tea and donate anything you can (I know times are extremely tough at the moment) to this amazing cause hopefully your donations will one day give us the answers we so desperately want.
Oli’s mama Lydia xx
Did you know that 1 in 20 Aussie kids are born with a genetic disease or birth defect? That’s one in every classroom!
This year, I’m taking part in Jeans for Genes to help fund the incredible scientists at Children’s Medical Research Institute, who are working today to change lives tomorrow.
Your donation will help keep labs running, research advancing, and hope alive for kids who need it most.
Together, we can make a difference.
Join me. Share this message. Donate. Thank you!
This year, I’m taking part in Jeans for Genes to help fund the incredible scientists at Children’s Medical Research Institute, who are working today to change lives tomorrow.
Your donation will help keep labs running, research advancing, and hope alive for kids who need it most.
Together, we can make a difference.
Join me. Share this message. Donate. Thank you!
