After finding out that friends of ours had a grandaughter with CDKL5 a few of us decided to organise a charity evening to raise funds. A charity evening was organised and took place on the 30th March this year to raise funds and awareness for research in to CDKL5. It is a rare genetic disorder which affects only around 40 children in the UK. The evening was a great success and after waiting for cheques to clear I can know start paying in the money. Our guest star of the evening was Gracie who is an absolutely gorgous little girl.

I would like to thank everyone who helped to organise the evening and to set up and a huge thank you goes out to all of those who provided their services and time for free xxx. Thanks also goes out to those who attended and made the night absolutely fantastic. 

I would love to personally thank everyone who donated, spent precious time and effort and those who also spent their hard earned money on behalf of Gracie and CDKL5 UK from their generosity comes our strength and hope to deal with this and help others cx lots of love Sarah and Gracie xxxx

 

 

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