Noah 1 in 5 Million-Fibrolamellar

Hi my name is Noah and I am 10years old. I was diagnosed with an Ultra Rare Liver Cancer on the 4th August 2017 called Fibrolamellar Hepatocellular Carcinoma. My Cancer only affects 1 in 5 million people world wide. As far as I am aware I am the youngest boy in the world at this current time and the one of two children Fighting this form of Cancer in Australia.
I had the only Curative Treatment on the 4/8/17 which was Major Surgery. I had over 1/3rd of my liver removed, my Gall Bladder and 11 Lymph Nodes. After Surgery I could not talk, walk or hardly move. I had to learn to do it all again. It was hard and scary.
I showed No Symptoms!! My mum just took me to our GP as I had only put on 2kgs in 2years and I was talking a lot about Death. My 8year old brother Kye weighed more than me. The doctors kept telling my mum for many years that I was just small and not to overthink or worry. My mum never gave up asking Why??
After 4 bloodtests my GP realised my mum wasn't going to stop till she found out why my weight was so low. In the liver blood test my levels were slightly high and my GP ordered a liver Ultrasound on the 23rdJune. The next morning my mum received a phonecall at 9am on a Saturday morning saying they found an abnormality on my scan and I had to see the doctor urgently on the Monday morning. A tumour was detected inside my liver measuring 4.2×4.6x 5.8cm. That was the day our whole world stopped.
There is no Government Funding and No Cure for my Cancer FHC.
There is an 83.5% chance of it reoccurring according to the little data there is on this ultra rare disease.
There is a Fibrolamellar Cancer Foundation and a whole Fibrolamellar family that I have become apart of from across the world on facebook. They have been a wonderful support to my family and I during
these hard times and I want to help raise awareness in Australia to help them in
finding a  cure. Last year we raised just
over $13000 for the FCF in America but this September my brother Kye will be
Going4 Gold at the Spring State
Championships and National Clubs
Carnival at the the Gold Coast. I
would like to donate monies raised to
Camp Quality Australia. Camp Quality
have paid for two weekend camps for my whole family and my sister and I are attending a siblings camp in the next
school holdays for 5 days. We have the
best time with all the  other families
living with Cancer and the Volunteers
are so nice and fun to hang around. They even brought a puppet show to my
school. They pay for everything and my
mum and dad even get pampered with
massages and day outings away from us
kids. We really want to
give back to Camp Quality by raising
much needed funds so they can continue to do this for other families  as we know
how important and valuable they are
creating beautiful memories for many.
I have a Facebook page called
"Noah 1 in 5 Million" and it seems to be
spreading awareness all around the
world. I now know this is part of my
journey and  I'm asking all my supporters to please please please donate to this
wonderful cause, even if it is only a gold
coin donation I would be so grateful as
this is so important to me.
I might only be little but I strive to fight
and make a difference!!
Thankyou for your support,
love from Noah 1 in 5 Million

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Stohlie Brissett-Costa 
Green Valley NSW

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