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Darren Clare

Little Belle and Grandads Fundraising Page

running the Virgin London Marathon for Young Epilepsy because they do some fantastic work

66 %
£2,000.00
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  • Event: Virgin London Marathon 2014, 13 Apr 2014

Young Epilepsy

We support young people with epilepsy to build better futures

Charity Registration No. 311877

Story

First of all Hello and thank you for taking the time to visit our page. If you read on, you'll know exactly why we've chosen to raise money for the cause we have.

Our Belles Story

For those of you that know our Isabelle, you'll know that she suffers from severe complex epilepsy. This has meant many ups and downs for all the family, not least our little Belle. Even though she does seem to understand a little more what's happening to her she continues to take it all in her stride.

We kept hoping that one of the many different combinations of medication would bring her seizures under control, but this wasn't to be. After many months of trials, she was then fitted with a Vagus Nerve Stimulator (VNS) which sends constant electrical impulses to her brain. Again we built our hopes up that this would bring things under control, and for a while seemed to be helping as the more severe seizures grew further apart, even though she continued to have smaller ones.

Almost 12 months on from the operation we had all hoped that her medication could have been reduced and her seizures brought under control, however our Belle still ends up in Intensive Care and the High Dependency Unit following her more severe seizures. As you can imagine this devastates the whole family, no-one should ever have to see any child in this situation. She is a remarkable little fighter, who has pulled through each time and the relief we all feel is indescribable. 

Her condition has also meant that her development has been severly hampered, and at four years old now, she has very limited vocabulary and is extremely lively. She has just started attending a specialist school, where her teachers have been very impressed with her progress so far.

Isabelle has also recently been taken to the pool where she was that excited and hyper that she instantly started swimming much to mums amazement. Swimming is just one of the many, many ordinary things that Mum ensures our Belle takes part in as she wants her to be treated as ordinary as possible.

The next operation planned for our Belle is to have a 'portacath' fitted, this is because of her having so many intravenous cannula's in the past that it is now very difficult to use these as a lot of her veins have collapsed. The portacath will allow emergency medicines to be administered far easier and faster.

We are all hoping that our Belles condition is eventually brought under some kind of control and that she will be able to lead as normal a life as her condition will allow. 

So thank you for reading our Belles Story, and please help us help Young Epilepsy by donating as much as possible no matter how little, it will all be greatly appreciated.

Donating through JustGiving is simple, fast and totally secure. Your details are safe with JustGiving – they’ll never sell them on or send unwanted emails. Once you donate, they’ll send your money directly to the charity. So it’s the most efficient way to donate – saving time and cutting costs for the charity.

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  • BIG SMILE FOR EVERYONE
  • EXCITED ABOUT GOING OUT IN THE CAR
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