Special Thanks

Mia and her family would like to thank the following


*Claire House For Keeping Mummy Sane
*Dr Briggs & Nurses @ Warrington Childrens Ward
*Dr Rachel Kneen & Dr Stuart McCloud @ Alder Hey
*Nurses on the Neuromedical Ward & HDU Ward @ Alder Hey
*Dr Emma McCann & Team For Finding My Diagnosis
*Sue Lawtons Team For Always Being There For Us
*Elsie Ashton for Volunteering Her Time to Look After Us Each Week
*The Butterfly Project for helping mummy out when things get too much.
*Sunshine & Rainbow Nursery for lots of wonderful & fun times
*Foxwood Special School, and all their staff for making Mias time at big school so special
 

Welcome to my website...

This is a website all about me and my condition. I have a rare genetic disorder called CDKL5. This is a variation of Retts Syndrome (MECP2) a neurological disorder affecting over 10,000 girls born every year. CDKL5 is an extremely rare variant of this with only 41 reported cases world wide (June 2008) I am a very special little girl indeed. You can read all about me and my story below.

Latest News...

Thank you

This is a big thank you to everyone who came to my Birthday Party on Saturday

I had a wonderful time and were glad you could all make it.

Thank you also for all the lovely prezis.

 

Love Mia x

 

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