Special Thanks

Mia and her family would like to thank the following


*Claire House For Keeping Mummy Sane
*Dr Briggs & Nurses @ Warrington Childrens Ward
*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
*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...

Donation to the Ward

We visited the Warrington children's ward last week.  This time it wasn't for an admission But a mercy mission if you like?  We heard that thieves had stolen all the Wii and PS2 games  out of the ward!  So mummy decided that with some of the left over fundraising money it would be a good idea to buy more.  Not only is the playroom there for all the poorly boys and girls but their brothers and sister too.  I know without the playroom my big sister Amy would of gone nuts the amount of hours she's spent in the hospital with me.

Anyhow, I'm currently in alder hey hospital as I've had a very poorly tummy, hopefully I won't be in here for a long time?? Watch this space. 

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