Answers For Oli

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Why I’m Supporting Jeans for Genes

This August I’m again having a morning tea & Baking it Blue for Jeans for Genes to raise much needed funds to not only cure but find new and different genetic conditions one of which will hopefully give me an answer I so desperately want!  

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 Sydnrome4 Ataxia Telangiectasia5 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!

Funds raised over the years

Biggest Donor

Jean-ius Donor

$110

Thank you so much to my biggest supporter, Nana and grandad, for donating an incredible $110 to help fund vital research into curing children’s genetic diseases.

Raised so far

With your help, I have raised...

$361

You’re helping fund research to find cures for kids with genetic diseases. Every dollar counts!

Biggest Donor

Nana and grandad

$110

Thank you so much to my biggest supporter, Nana and grandad, for donating an incredible $110 to help fund vital research into curing children’s genetic diseases.

My Impact

So far this year, I've helped fund...

7

Hours of research

Every $50 raised funds an hour of vital research.

Thank you to my donors

$57

Sarah Pomeroy

1 day ago

$110

Nannie And Poppie

Love Nannie and Poppie

3 days ago

$50

Clare Barlow

Hope you find answers! Happy Baking!

4 days ago

$110

Nana And Grandad

Go Oli show them how it’s done!

1 week ago

$33

Mclean Family

Every little bit helps

1 week ago