Hello my name is Oliver,
I am 3 years old from Adelaide, Australia & I also have this nasty rare disease called Pearson's Syndrome - which I was diagnosed with at 8 months of age. Pearson's Syndrome is so rare, as far as we know, I am currently only one of two people in Australia with it & unfortunately it's terminal.
Pearson's Syndrome affects everyone differently & I have been through a lot since I was born; frequent doctor visits, hospitalisation, blood transfusions, lots of pricking and prodding, plus lots more.
On top of Pearson's Syndrome I now also suffer from Osteoporosis (I've broken both my femurs), Arachnoidis, Cerebellar Ataxia, Pancreatitis & am totally reliant on being feed by IV fluid TPN & Lipids for 14 hours a day through my PICC line as I can no longer handle anything including fluid in my tummy as unfortunately it has made me very crook since I was 2 years old but I am very brave boy though.
I am regularly hospitalised, so far in my short time Ive spent over 1 year of my life in there & my longest stay was 299 consecutive days.
The doctors and I are on a first name basis and I just charm the nurses by blowing them kisses & giving out lots of cuddles.
When I am out of hospital I love to read books & watch my favourite TV shows - 'The Wiggles', 'Postman Pat', 'Raa Raa the noisy little Lion', 'Mister Maker' & of course my favorite 'Fireman Sam'.
Life is tough as either Mummy or Daddy are by my side all the time, there are things they are unable to do, like work - as I would much rather them here with me holding my hand or sometimes me hold theirs.
But hey I am not going to forget about myself as when I am feeling better I love to do things like play with my Bulldogs, go on day trips to the zoo, seeing my friends at Kindy, playing at the park with Mummy & going to the football with Daddy but there is so much more in life I would love to explore and experience like every other child gets too.
Any donation to thechampfoundation.org is greatly appreciated as all your donations go towards research & finding a cure against this nasty disease which no child should have go through so from the bottom of my heart a big high five & thank you from me to you,
Lots of love,