Hi, I’m Evie aged 9. Here is my story.
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My story begins with my dad. He had childhood Leukaemia. And not only did he survive, but my brother and I were made through IVF/ICSI.
I took quite a few attempts to make me. But just when my mum and dad had given up hope, their last attempt worked!
Every other day after me (the embryo) had been put into my mummy, she had to have a scan to check I was still there. The nurse said to my mum “This has to be a girl, she is one strong cookie and not moving for no one!”. Mum says the nurse was spot on about me, I am one tough cookie!
In 2011 I started with stomach cramps. Not bad, just now and again. I then started with other problems (which I’ll save you from hearing about). It was usually when there was a bug going around at school.
By 2012 it was getting worse. I went to my doctors a few times, but again, it was always when bugs were going around. I started missing lots of school.
By 2013 I was getting much worse and by the summer my stomach cramps were all the time. I felt I was going to be sick with the pain as it was so bad! I couldn’t bear eating it made everything worse. I was so tired I couldn’t be bothered to do anything, I just wanted to rest.
I went back to the doctors one morning. They wanted to do blood tests.
4 hours later I was in hospital.
My blood test showed my white count and platelets were very high. The hospital dismissed my blood tests, weight loss and pain in my right lower side and back pain. They wrote on my notes ‘no evidence of IBD’.
My dad stood up for me (I love my dad x) and I was referred to the Rapid Assessment Unit within a week. Eventually, after nearly spending all day there (I spent ages having an ultrasound) I met a Dr who believed me when I said my stomach hurt.
Then things started moving very quickly.
On my worst day, I had to drink this awful medicine to clear out any poo (there was nothing there to clear!). It made me sick and gave me even worse stomach cramps, although I had to have it for my colonoscopy and endoscopy.
This wasn’t so bad as I had a magic sleep. They even found a mask for Boris (Boris is my fluffy badger, and I’m saving him from the cull and he’s saving me) so we could have a magic sleep together. The anaesthetist even chose heart monitor stickers to match my Tinker Bell pj’s.
They said beforehand that I was going to be tube fed. This was to help soothe my intestines and help put on weight. But when my consultant looked at my intestines they were so poorly there was no point tube feeding me and I was put on a lot of steroids. I called them my ‘Barbie Pink Tablets’ because they were pink and my mum dissolved them in Ribena for me.
I then went on quite a few more tablets (yuk), but my mum found a way to help by taking them with different flavoured ice creams.
Tinkerbell says “all you need is faith, trust, and a little bit of pixie dust”
I say “all I need is faith, trust and a little bit of Azathaiprine”.
I also had to have a MRI scan (at this point my friend Conner sent me Bessy, another badger to keep Boris company). The badgers came with and they sat on top of the machine and watched my feet going in and out of the big tube machine! I had to drink a drink which wasn’t nice and had to have a cannula. But the staff were really lovely and looked after me.
I have had a lot of blood tests and will continue to. It’s ok, as I can go to my doctor to have it done. I call him Dr Magic as I never feel it!
When I was in the hospital we met my specialist nurse (I like my nurse she wears a purple uniform). She gave my mum and dad a book and information from the Crohns and Colitis Society (mum said she felt someone was holding her hand whilst she was holding mine). I now want to raise money for the Crohns and Colitis Society to say thank you for all their support.
After missing lots of school and my holidays, I’m now back at school. YAY! As well as Brownies!
So, my message is:
Without research my dad wouldn’t have survived.
Without research my brother and I wouldn’t be here.
Without research we can’t help people like me who are struggling with Crohns.
I want to raise as much money as I can to help fight Crohn’s for people like me.
So if you can help and donate to my just giving site for The Crohn’s and Colitis Society, Boris and I would be very happy
What your money can do:
£5 - Help us to reach out to the family of a newly-diagnosed child through our Family Information Pack.
£10 - 10 patients could benefit and feel more informed about their condition through our booklet, Understanding Crohns and Colitis.
£20 - A person in distress could receive support from our help lines.
£50 - Craft material for a Family Fun Day to help children feel normal again.
£100 - Help pay for equipment for a research project.
£300 - A Personal Grant for someone in need.
£1,000 or more - Contribution towards a research project.
Watch my short videos: