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...

Mias on IVs Again

Well Shes not done bad at all, its that time again, Mias on Intravenous Antibiotics again. I cant complain though its been 3 months shes her last lot shes done really well. I am now fully trained to do them at home so thats good. Only a week to go. Yeh

We took delivery of Mias new "P Pod" yesterday its gorgeous, its a fancy been bag with a moulded seat in it she looks mega comfy. I have added a piccie of her in it to her gallery.

Get Well soon my baby. Mwha Mwha Mwha x x x

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