As many of you are aware our daughter Evie lives with CDKL5.

What does this mean for Evie?

Evie will have seizures everyday, she has global development delay, a visual impairment and is dependent on me for everything. 

Evie got diagnosis with CDKL5 in June last year and since then we have found CDKL5 UK. They have given us so much support and more information and guidance than I could have ever asked for from any doctor. Please donate what you can, it will go such a long way.

CDKL5 UK are currently involved with a protein replacement therapy which is extremely exciting which I am really trying to support as one day, maybe not for Evie but it could cure a child with this life changing condition. 

Evie is currently doing very well and getting stronger all the time. She is a little angel and those who know her will agree she certainly has made a big impact on all our lives. She makes you realise what's important and it's the little things that really matter. Times can be hard but we would never change our little chick. 

I am going to be running or cycling 5k every day for 50 days Starting on the 19th August 2013. Evie might do some of this with me where possible!! This means that on my relaxing holiday in Portugal I will be packing my trainers and continuing on with this challenge!

Wish me luck!

From all of us, Thank you so much for your continued support xxx

 

Thanks for taking the time to visit my JustGiving page.

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.