Emily was diagnosed with Friedreich’s Ataxia at the age of 8, with the effects gradually becoming more prevalent until she was wheelchair bound by the age of 13.  Friedreich’s ataxia is an autosomal recessive genetic disease that causes difficulty walking, a loss of sensation in the arms and legs and impaired speech. Many people, including Emily,  also have a form of heart disease called hypertrophic cardiomyopathy.  Emily was, in many ways, a normal teenager, wanting to do all the things teenagers do. She was popular and had many friends as well as a wonderfully loving family. Emily’s determination to do what normal teenagers do made her an inspiration to many, and despite her difficulties, she achieved outstanding GCSE grades. 

Despite managing the disease for many years, Emily sadly succumbed to a sudden catastrophic cardiac event and passed away in hospital in December 2019, with her parents by her side.  Emily was passionate about making life better for people with Ataxia, so would undoubtedly be thrilled with any donations you are able to give, however small.   

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