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Welcome to my website...
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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...
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Mias on IVs Again |
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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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This website has been kindly donated by
MyDigitalMedia. Copyright Mia Loudon 2008. |
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