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 Doing Well

Well Mias been in school now for almost 2 weeks!!! Thats the most shes done since July last year.

Shes doing really well at the moment, the odd day and night on oxygen but generally good. Is due Antibiotics in February but thats fine I can do them at home now.

Just ordered Mias oxygen for the cruise and they want £460 for the 2 weeks!!! Its shocking we have to pay for Oxygen!!!!! Hopefully she wont use it but you can guarantee if I dont order any she will need it.

Anyhow I have put some new pictures in her album. Enjoy.

View more articles...


	This website has been kindly donated by MyDigitalMedia. Copyright Mia Loudon 2008.