I received an email asking for help and telling me that on the 29th February is Rare Disease Day but I did not want to wait until then to tell you a story when every day is critical... critical for one little girl called Evie...

Evie Read is a five year old girl who has been diagnosed with Ataxia-Telangiectasia (“A-T”) - a rare, neurodegenerative, genetic disease leading to disability and premature death. This disease is vicious and will show no mercy.

I do not have children myself but I have nieces and nephews. I know the love I feel for them as 'Aunty Anna' and I know how devastated I would be if I received news that one of them had been diagnosed with something so rare and so cruel. I know how distraught my family would be. The feeling of absolute uselessness, knowing that before our eyes we can see a train crash taking place and there are no breaks to apply.

For one family this is happening... Emily and Toby Read are doing what any parents would do in such a situation. They are not giving up! They want to reach out and do whatever they can to raise awareness, funding and raise their own hopes that they can be the protectors that parenthood depicts them to be. Their own dreams to see Evie grow to becoming an individual in her own right is bleak and one of tragedy.

There are many stories, I am sure, like this one but I only know of Evie's Story. I cannot change the situation and there is no magic wand I can wave but I can ask you to stop for a few moments and watch the following video and I leave you to decide if you can help in any small way.

I watch the news, I see the unbalanced situation in the world and I feel helpless and totally useless. Today I offer my platform as my way of reaching out to seek help. I may never meet Emily and Toby and I hope with all my being that one day I will meet Evie...

Website: http://www.actionforat.org/about
  
Facebook page: https://www.facebook.com/pages/Action-for-A-T/300005930046577

Sponsor the walk here: www.bmycharity.com/emilyread