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Rory, George and I are taking part in the Hever triathlon this weekend to raise money for a very special girl, Anna Lewis, who tragically died at the age of just 14 months. Anna’s parents, Jess and David, have worked tirelessly over the past 9 years to raise awareness about Mitochondrial disease and to fundraise for Great Ormond Street Hospital, and we want to do our little bit to help them.  Here is Jess’ story...

Our one year-old daughter Anna went into hospital suffering with seizures and subsequently developed liver failure. Where two or more organ systems are affected in a patient with no obvious illness, Mitochondrial Disease can be suspected.

At Great Ormond Street Hospital (GOSH), they were seeing about one case of Mito a year. Exactly a year before Anna's admission, they had looked after a little boy who was exactly the same age as Anna was when he fell ill. with Mitochondrial Disease. Anna's illness was presenting in the same way as his had which led them to suspect that she also had Mito. This led them to run the tests which ultimately diagnosed her illness.

The day her diagnosis was made is one that I will never forget, and I wrote about it here: https://alosslikenoother.home.blog/2019/01/07/sliding-doors/

My hope and prayer is that in the future no parent has to be sat down and told what I was told that day. It is life-changing. Your heart keeps beating, and you live on. But something in you dies and you will never be the same again. We need that cure.

#mitoawarenessweek #mitoawareness #mitochondrialdisease #theannalewisbff #gosh #greatormondstreethospital #weneedacure #Mito

Thank you so much for your support.

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