Sophie's Story
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When I grow up... I'd like to be well

By Sophie

Hello! My name is Sophie, although everyone calls me Sissy. I am two and a half years old, and my favourite things are Sponge Bob Square Pants, going to the park, cuddles with my mummy and rides from my daddy.

I am the boss of my two brothers Ryan (four and a half) and my twin brother Toby. I love playing with them, but I get tired very easily. My liver is broken and doesn't work very well because I was born with Biliary Atresia, a rare disease of the liver which usually leads to liver failure and the need for a liver transplant.

I have been waiting for about three months now for a shiny new liver. Mummy says that someone who doesn't need theirs anymore will donate it to me - I thought that was pretty special!

I would love nothing more than to be able to dance like a ballerina and play blocks and cars with my brothers without getting tired. I have only recently started walking as my bones are just not strong - and in the process I have broken three bones. That hurt. Mum says I am a good girl because I take all my 16 medications each day so well. I've been doing it since I was a baby so it's normal to me!

I have lots of friends at the hospital, as I spend lots of time there. Blood tests are not my favourite thing, but mummy or daddy are always there holding my hand. Did I tell you about tubey? I wear a tube that goes into my tummy and over night I am connected to a pump and get lots of good nutrients while I sleep! Everyone wants me nice and strong for when the time comes to get that shiny new liver. I wonder when that will be.