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This year, I have decided to run the half marathon for the gorgeous Emmie. The cheeky, sassy little sister of my eldest’s best friend.

Emmie suffers from a rare genetic condition called Kniest Dysplasia which only one in a million people live in the world live with.

In the words of her brother Adam..

‘Emmie is 6 years old, however she remains the size of a 9 month old baby due to her condition. She can’t speak but she signs and uses a communication device and she is always singing. She cant walk but she shuffles around and uses a speedy little wheelchair. She wears hearing aids and very strong glasses which she never takes off, even to sleep! Yet despite all this she is so happy, funny and sweet albeit very bossy and is always telling us what to do!’

Emmie’s skeleton is pressing down on her spinal cord and was due to have surgery on her spine before it affected her limbs, causing possible loss, and her lungs. However in Christmas 2020 the doctors delivered the devastating news to the family that they believed the surgery to be too risky and so they should instead think more about helping Emmie live her best life now rather than putting her through dangerous surgery. This difficult decision means that Emmie is not expected to live past her 10th birthday.

So this year, I have decided to run the half marathon for Emmie and her wonderful family and their charity. They really want Emmie to have everything that she is going to need to help her to stay strong and keep moving. They need to raise funds to adapt their house and any money I raise will be used towards creating a downstairs bedroom and a shuffle wetroom.

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