Katie Sahota
Woodloes Community Events
Fundraising for Acorns Children's Hospice Trust
Story
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Ethan's Story
I am 6 years old, and I have Lesch Nyhan Syndrome. This means I have to be fed through a gastrostomy tube straight into my tummy. I cannot stand on my own, or sit up, or walk or talk. I also have problems with reflux, constipation, and dystonia. This Genetic Syndrome only really affects boys, and I was only recently diagnosed. Up until then I was a SWAN! (I had a Syndrome Without A Name!)
But I am just a kid living on our estate. I am very happy and I love playing with my brother and going out in my specially adapted wheelchair. I absolutely love school, and you will always see me smiling when I go in. When 7th Warwick (Woodloes) Beavers starts up again in the new year, I am going to be joining them, too.
Because of my syndrome, I need a lot of daily medication to keep me happy, comfortable and settled. Our house is full of very special supportive equipment – I have a uniquely adapted bedroom and wet room, and we have a specially adapted family car which fits my wheelchair. To help with daily living I have a stander, a posture chair, a wedge, a corner seat, and a specially adapted wheelchair. At the moment I am trying out a special walker, so that I can be upright and see the world from a better angle – and move along at the same time.
I can’t talk like other six-year olds, but I am pretty bright, and I can let my family and teachers know what I want or need. My mum says that I am a dream, and my family wouldn’t change me for the world. Sometimes, I have a two-day break at Acorns Children’s Hospice. They have all the equipment and clever staff to look after me, while Mum and Dad and Tristan have some time together. an you imagine how much all this osts? That is why we do the Scary House, and why my dad runs a posh fund-raising dinner each year – when we are allowed, and when it is safe! These events usually raise thousands of pounds for the charity. So, this year, please help us to raise funds for Team Ethan and The Acorns Children’s Hospice, by supporting the Woodloes Community Events, and making a donation if you are able.
That’s enough from me for now.
Please join in with all these great events in our community.
Please join in with all these great events in our community.