Fundraiser of the Month – April 2017 – Hannah Bowen

Thank you to Hannah who raised an incredible £1,200!!

When I was in my final year at school, I became a big sister and mentor to many of the year nines. I jokingly called them my “minions” and loved spending time with them and looking out for them whenever they needed someone older and (not much) wiser to turn to. So when I heard that Lucy had EDS, I was devastated. She is a truly special minion who always looked out for others. She even spent hours of her weekends testing me for my A Level exams and never ceased to make me laugh and smile, especially when we were chilling on our beanbags on the balcony, trying our best to tan (despite ending up as pale as snow).

For those of you who don’t know, Ehelers Dahlos Syndrome (EDS) is an incurable genetic connective tissue disorder that causes hypermobility, frequent dislocations, soft, bruisable skin and potential internal complications.

For Lucy, the progression of EDS has resulted in her not being able to eat or drink anything. This means she has had to be fed through a tube into her intestines, which in December was replaced by a central line that takes nutrients straight into her bloodstream.

Just imagine for one second that you cannot eat or drink anything. No more of your favourite snacks, no more restaurant treats, no more cups of tea after along day! I for one can’t comprehend how difficult that would be.
However, despite this life-changing condition, Lucy has still been so strong and optimistic. It has been an absolute inspiration to see that despite all the hospital visits and tubes and operations, she still manages to smile and laugh and joke about everything, I am truly in awe of her positivity and am so so proud of what a beautiful person she is, inside and out, no matter what the world throws at her.

To read more about her story, go to:
and read her blog. It’s an amazing and touching read that I would 100% recommend!

Unfortunately Ehlers Danlos Syndrome is a very rare condition, which scientists still know very little about. To add to this, there is very little funding into research and treatment for EDS.

That is why I have decided to raise money for Ehlers Danlos support UK in a way I feel relates to Lucy. For all 40 days of lent, I will be giving up some of my favourite food and drinks, carefully selected by myself and some of the people who know me the best.

Here is the list of “banned food and drinks” I will give up:

  • Alcohol
  • Crisps
  • KFC (and all fast food)
  • Chocolate (including anything with chocolate in it)
  • Fizzy Drinks
  • Popcorn

I will also be making the ultimate beverage sacrifice and giving up TEA. To put this into perspective for those who know me less well, I drink an average of 10 cups of tea a day, I am quite literally an addict. However, I feel that if it helps to raise more for EDS, then it is a more than worthwhile cause!

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