Story
This event will be based in:- Date 21.09.14
Sible Hedingham, Time:1:00
Colne Valley Railway,
C09 3DZ.
My name is Ellalouise Middleton I'm 16 years old from Essex.
Lloyd Claydon from the Black Water Preservation group, has helpfully rounded up a group of willing volunteers to pull a 40 ton steam locomotive to raise money for an Un-curable Disease called Dystonia. Thanks to Mr Claydon and Volunteers.
I was diagnosed at 14 years old and it has had a massive impact in my life within these few years. My life style has changed dramatically due to this Illness because i cannot do any of my hobbies or interest i.e play football, dance and horse ride. All the basic things that a teenager would do. This is down to Dystonia effecting my legs, and feet.
I go to Great Ormand Street Hospital for check ups, but since there is no cure they do benefit us by trying to support me and doing the best they can.
I'm not only here to raise money I'm also here to raise awareness because its a rare disease that effects many children and adults who suffer with Dystonia.
I'm usually in a wheelchair but most of the time i'm on my crutches because i cant walk un-aided. I cannot also walk very far due to weak muscles and get very tired easy.
I do struggle mentally due to the fact i used to play football and be a keen street dancer, also horse riding; but my life changed due becoming ill and now its a battle getting up every day to do different things. Even though all this is happens i still have a smile on my face an hope one day their will be a cure!
I achieved one of my main goals by raising £6,000 on my last Charity Event, which took place in November last year. The event was based on men pulling a Fire Engine for 8 Miles.
I'm determined to raise much more money as possible for Dystonia to try make people aware that this disease is out there and can effect anyone, at anytime. We are trying to spread the word.
We are also raising money so we can find a cure one day for those like myself who suffer with this terrible illness because this money would make a huge difference to those who suffer with Dystonia.
Thank you for reading my story an Dystonia, spread the word.