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Bella’s story written by her lovely Mum Rachel;

It’s been one year since our Bella arrived and changed our lives. Beautiful Bella. Tiny, sweet, angelic, Bella. The light in our room. The sun in our sky. The fight she has inside was evident even then. A very difficult birth. Time in intensive care. Yet she took it all in her stride. Shes been strong from the start.

Last month when we received a diagnosis for our sweet Bella, our whole world stopped. 

A diagnosis of Angelman Syndrome - a rare genetic disorder caused by missing information within chromosome 15. Most individuals with AS are nonverbal, experience developmental delays, learning difficulties, seizures and challenges with mobility and balance. Our hearts broke into a thousand pieces. 

This girl is a fighter. She is strong. She is absolutely brave and no matter what challenges lie ahead in her path, there is no doubt she will overcome them all with us holding her hand, cheering her on and fighting her corner, every tiny step of the way...And there Bella will be, smiling through it .

The support we have received from Angelman UK on their Facebook page has been amazing. It can feel isolating and very scary receiving news like this not knowing where to turn or what to do. But there are always others out there who know how you feel and can be a shoulder to cry on because they have been through it. 

I will be running for Bella and all the other angels with the diagnosis to raise money for the charity who provides support and help to the families and individuals effected by Angelman Syndrome.

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