My name is Leo,I'm 5 and I have just found out I have a disease called Achalasia.
I wondered why I was being sick every time I ate or drank something, this thing called Achalasia is the reason.
It has made me lose most of my energy and a lot of weight,I now only weigh 15.5 kilos and I will soon be 6
I used to be full of fun and I do try to keep smiling but it does make me feel very fed up.
Grown ups often ask my mum why I look so serious and unhappy, I'm not unhappy, just tired and fed up.
When I first began to be unwell, no one knew the reason, some thought they did, they thought it was because I had just started school and was stressed, I wasn't. Then they thought I had an eating disorder, I didn't.
I was even told to "just stop making yourself sick Leo" But I wasn't.
My mum was very worried and though she kept taking me to the doctors, and Hospital, she could not find out what was wrong, so she was scared I think.
Anyway after a year of keep being sick all day I went to see a man with a machine that showed a video of me inside when I drank this special drink,it was him who told my mum and me what was wrong.He was very surprised too!
I was then sent to a hospital for children called Great Ormond Street in London for some tests and the people there told me I was very special,one in 20000000,because this Achalasia is very very rare, especially if you are only 4 like I was when it started,But the tests were still scary.
They told me I was brave and gave me lots of stickers,they were great,but I was still glad to get out of there.
There is no cure for Achalasia just some fixes that don't last forever.
My mum searched all the internet, but you have to put in Achalasia to even find out there is such a thing.No wonder it takes so long of being sick to find out you have it!
That is why I want my mum to help me tell other parents that Achalasia does exist and that it might be Achalasia that is making their child feel so unwell.
Can you help us tell them.
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Nov 28, 2016
Sorry I couldn't be at the bake off event. I'm sure it was great fun 🍰Wishing you success in reaching your target and raising awareness of Achalasia.D x
Nov 15, 2016
Dear VicCannot be at the bake off on 27th but hope this donation will help.coral_MS
Nov 14, 2016
Cant be at the bake off, but good luck with the fund raising for this good cause and have fun
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