I’ve been sent a video about a remarkable little girl called Evie.  Her parents Emily & Toby found out before Christmas that their precious five year old has a very rare disease called Ataxia-Telangiectasia or A-T. 

Because it’s rare there is no focus or real funding yet for this illness and so as parents they are doing everything they can to raise awareness and funds, hoping to speed up the process of trying to find a cure.   

February 29^th is Rare Disease Day and to coincide with this they have been in touch asking anyone who reads this and who has ever wanted to set themselves a personal challenge ~ be that to run a marathon or cycle a race or even bungee jump (!) – to do so in support of this tiny charity.

If you can’t do that, but would love to help in another way, then you can sponsor Emily and her friends who are doing a 100km walk from London to Brighton in May for the A-T charity. (www.bmycharity.com/emilyread)

And please remember to visit their Facebook page, as just by clicking ‘like’ and ‘share’ you are helping them to raise awareness https://www.facebook.com/pages/Action-for-A-T/300005930046577

And finally click here to watch a lovely video they’ve made http://vimeo.com/35835631 despite finding themselves in a situation that thankfully most of us will never have to face...

Thank you