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 The Butterfly AVM Six Peak Challenge 22nd-24th August 2016


Alex’s Story

This summer, the nine of us have decided to break in our walking boots and climb to the top of 6 mountains for a charity very close to our hearts – The Butterfly AVM Charity.The mountains we will be climbing are ‘The National Three Peaks’ (Ben Nevis, Scafell Pike and Snowdon) and ‘Yorkshire’s Three Peaks’ (Pen-Y-Ghent, Whernside and Ingleborough). We have set ourselves a goal of 60 hours in which to climb 6 mountains, drive over 1250 miles and fit in as much sleep as we can, between the 22nd and the 24th of August. Collectively we have known Nikki for many years and so are very aware of just how significant an impact an AVM can have on a victims quality of life. We have watched in awe at how much of an inspiration Nikki has become, to adults and children alike, as she gracefully copes with adversity and does far more with her life, than many of us could imagine doing with our own. As a group, we want to do as much as we can for ‘The Butterfly AVM Charity’ in order to allow Nikki and thousands of other brave AVM sufferers all around the world to dream big and have the opportunity to achieve those dreams. Your contributions can make a change, and help AVM sufferers like Nikki take one step closer to finding a cure.Thankyou!

We raised over £5000 !!Alex Christou (Nikki’s brother), Nico Haritou, Ollie Grammar, Luke Loukaides, Sekai Akinlola, Terry Lovell, Jono Fereday, Alex Christodoulou, Ollie Fereday

Elena and Natalie’s Inca Trail/ 31/03/2016



Natalie and I went on a five day trek in Peru to raise money for a beautiful and inspirational person. You might be wondering why we have chosen to do something so crazy!! The best way to explain is to hear it from Nikki herself… So here are the words of a truly inspirational person:

 
” Hi Everybody, isn’t this amazing… seeing so many special people here to support me and my Charity . Firstly I would like to apologize about my voice, it’s been weak and croaky since my last operation , but I will do my best to finish my speech as I think it’s very important to thank you all personally.

Today is very special , we have a chance to raise money to support AVM research in the UK for people like me , because we all deserve a chance to have a happy, healthy life, free from the clouds and rainy days that living with an AVM can Bring.

I am not perfect, none of us are, that’s what makes us unique. But when we look at magazines with air brushed faces this makes us feel that if we do not look perfect we are not special. This is wrong .
Every day when i walk out of the door people stare at me , is it because i’m drop dead gorgeous ?…………….
No,…. sadly it’s because the face I have now is the not face i had as a 6 year old when I never had a care in the world . My AVM has taken that away from me.

One day i was out shopping and i noticed a little girl pulling at her mummy’s trousers and pointing at me… sadly this happens a lot, but this time I just looked at her and smiled, then for some reason I approached her and said hello ! .
then we had a little chat , not about anything special but when we said goodbye to each other , the little girl turned away and smiled . After we spoke she never saw my scars she just saw a normal girl .

So please if you see anybody who looks special , please do not just stare, go and say hello or give them a smile .

I believe that if you try hard enough you can achieve your dreams.

When we met last year my youtube channel had just over one thousand subscribers, now I have nearly thirteen thousand !

I have friends around the world. I try to give them an insight into my life and try in my own way to show them that beauty is on the inside .

Despite my AVM, I believe that every day can be special. When you have an illness without a cure it makes you realise that you cannot plan for next week, next month or next year.
I have in the last 5 years survived challenges that no child deserves and suffered a lifetime of pain…But I will never let my AVM defeat me.

That’s why all of you special people by being here today have helped to make a change to my life and every AVM sufferer around the world. You have helped us on our journey to be AVM free.
I would also like to say a special thank you to Keith & Liz for helping and looking after me at school .

I am only 11 but I believe that kindness and a smile can change the world of the people around you .

Imagine what we could all do together .

My name is Nikki Christou

I will never give up my fight

Keep on smiling

Thank you for making a little girl feel 10 feet tall ” xx


Why Not Walk 100 km in The Thames Path Challenge !

Our Fantastic AVM Team took part in The Thames Path Challenge and raised over a staggering £3000 !! The Team included Katerina Christou, Neil Boast , Paul Fereday and George Christou. This was a fantastic achievement and took a lot of blood sweat and tears to complete .  Well done to you all .

  To sign on for 2014 to Raise money for our Charity click the link :

 http://www.thamespathchallenge.com/holdingpage.php




Why Not Do a Triathlon?

Nikki’s friend Paul is doing a triathlon for our Charity. This is him in training enjoying a yummy chocolate Brownie!


Sponsor Paul


Why Not attempt The Thames Park Challenge ?

14 – 15 September 2013

Our Charity has just registered for The Thames Park Challenge, so if any of you feel fit and want to raise money for The Butterfly AVM Charity , have a read below ,

 The Thames Path follows England’s best known river for 184 miles (294km) as it meanders from its source in the Cotswolds on through the bustle of the City of London, to the Thames Barrier. Our Challenge heads West, starting out from the urban jungle of London at Fulham Palace through some of the most historic and picturesque towns in southern England.

In 2013 we have introduced more route options as well as a dedicated running section to the challenge – to allow for you to take on the event with suits your personal goals and ambitions!

100KM

  • Putney to Henley. A tough 24 hour endurance walk or Ultra Marathon run!

50KM

  • Putney to Runnymede. A daytime walk or marathon plus run.
  • Runnymede to Henley. A daytime walk or marathon plus run – or a night-time walk!

For more details just click links below and find The Butterfly AVM Charity on the list

www.thamespathchallenge.com/page.php?content_id=30&page_id=3

 

 

Online Registration Form


www.thamespathchallenge.com/register.php

Why Not have an event at your college to raise AVM Awareness ?

Thank you to Demetra and all the students of The London college of Beauty Therapy in London for raising loads of money for our Charity by holding a Family and friends event at the college which was brilliantly attended , Thank you all for your fantastic effort xxxx Love Nikki.

Why Not try Running ? Get Healthy and raise money for our Charity.

Thank you to Paul Bird and all Butterly AVM volunteers at RBS for running around Silverstone racing track to help raise money for our charity xxxx .   A brilliant effort ! .

Why Not have a Tea or Coffee Morning ?

Our team of volunteers raised over  £470 ! With our specially made Butterfly AVM cupcakes and lots of wonderful baking that would give the British bake off a run for its money !! , yum yum ! A special thank you to Katerina, Andy & Daniella for hosting the event, Tim , Keeley & Christina for cooking lots of yummy cakes and all the people who attended to find out more about AVMs and forget about their diets for one day !!!

  If you can host such an event to raise money and Awareness about AVMS, please contact us,

tanya@butterflyavmcharity.org.uk

we will supply you with all the information you need including AVM fact sheets and collection boxes  .

Thank you to all our volunteers , you have made a difference . Don’t just wish for a change , make it happen.

17th Sept 2012

Why Not Get Your local School Involved ?

Its amazing what your kindness can do. A very big thank you to Head Teacher Niamh Arnull and all the children & staff at  St Jame’s Catholic High School in London NW9 for donating £1000 !! Thats our biggest single donation so far came from a thriving secondary school in north London called St James. Every year, Year 7 students at the school think of innovative ways to fund raise for worthy causes; everything from sponsored silences to doing household chores for their parents.

The school’s wonderful students did such a great job of raising money last year, that they had a stash of cash left over. After a conversation with the school’s lovely head teacher Niamh Arnull, the school agreed to pledge a whopping £1,000 to our charity. We were overwhelmed and over the moon! Our deepest gratitude goes out to everyone at the school that helped raise the money – and also to Mrs Arnull, for her kindness and belief in our cause.

I’d like to send a very big thank you to  Andrew Polyviou, the head of Murray house, East Barnet School and the students  who have kindly agreed to support The Butterfly AVM Charity for this year! I had the pleasure o be invited to the school   take part in the school assembly this Monday to talk about our charity and was most impressed with the school and the pupils interest  and i am sure that they will think of many different ways to raise funds for our great cause .




The Latymer School

Thank you to all the pupils at The Latymer school in North London for raising money for our charity by having a Non- uniform day .

Thank you Eversley !

A massive thank you goes out to the children and parents at Eversely Primary school for raising funds for our Charity  by selling lots of raffle tickets & having a lottery.

Thank you Manor Hill Greek School !

On the 1st of December Nikki’s  Greek School hosted a tea and coffee morning with a raffle and raised a record breaking £3000 !! . We wish to thank all the organiser’s for their brilliant effort and we are truly touched by the hundreds of people who attended and made this event such a success. Thank you x

Why not contact us for a Collection Box ?

If you have a reputable shop near you that wants to help us collect donations, or just wish to have a function at your house, why not contact us and we will send you a Butterfly AVM charity collection box and some AVM Information and awareness sheets  .

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