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Raising money for...

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The XL Challenge is kindly supported by the following businesses:

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designed by Andrew and Pete

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Why?

When Elizabeth was born we thought we had everything sorted and for the first 6 months that was true - we had "one of each" and were enjoying the normal sleepless nights of a young family. Elizabeth had her first seizure at 6 months but because Daniel, her older brother, had had a febrile convulsion we didn't think too much about it. We moved abroad to Holland for work and at first it was a great adventure, however within 2 months of going Elizabeth started having seizures. The first time you see your child have a seizure is something you never forget (and is something I wouldn't wish on anyone). Elizabeth had up to four or five seizures a day, and needed to be resuscitated more than once. After a lot of investigation in both Holland and the UK (and much pushing) Elizabeth was diagnosed with Dravets syndrome when she was 3 years old. This was a devastating blow. The outlook for a child with Dravets can be grim because  it is often accompanied by autism and Sudden Unexplained Death (SUDEP). Elizabeth has severe Autism which means we dress and feed her, she attends a special school and we have no idea what will happen when she gets older. At the same time the shadow of SUDEP hangs over us because there are several Dravets kids, from the small UK group, who pass away each year without any warning. This is the devastating shadow that hangs over us! While Elizabeth is alive she can surprise us everyday by doing something or learning something that we didn't think possible which means so much to us and means we have to value every day with her as if it is the last.

 

Dravets UK has been a huge help to us whether it is as a forum to discuss developments in medicines, sharing knowledge on where to get support (financial and other) or to meet up with other families going through the same (and not feeling like the odd ones out!)

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A message from the  Gregor family

"As I turn 40, I find myself wanting to mark the occasion by doing something special and out of the ordinary - and this fits the bill! In all honesty, I intended to raise some funds for Dravet Syndrome UK this year by completing my first marathon and I thought that would be that. My plans spiralled, however and became the monster that is The XL Challenge and after mentioning it to a couple of people, I found that I couldn't really get out of the things my big mouth had promised. It is a really important charity to me and my friends, and you can read why below, in the words of Andy and Marie Gregor. I guarantee you will understand why I want to help when you have read it."

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