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Sean Spencer from Rawtenstall in Lancashire was 30 years old when he noticed signs of weakness in his legs – which he found particularly worrying as he had such a passion for sporting activities.

“I returned from a year’s travelling in my mid-twenties and could not get my fitness back to where I was before I went. I just thought I’d had too much of a good time travelling and it would come back! In hindsight this was probably the start of my muscle deterioration. However I just put it down to me being generally unfit”

However, after starting to recognise problems with his legs and after various tests, Sean was confirmed as having limb girdle muscular dystrophy at the age of 31.

Sean says,

“I felt like my life had been turned upside down. I can still remember sitting in a small room with a Doctor and a Genetic Counsellor being told the news that I had inherited a faulty gene and had limb girdle muscular dystrophy. It was like my world had fallen apart. I had an amazing little daughter and I was worried sick about what was going to happen to me and how I would be in the future.

After initially finding his diagnosis difficult to process, over time Sean began to accept his condition. Sadly in 2015 Sean and his family had to deal with the death of their father Roger Spencer aged 55 who was also affected by limb girdle muscular dystrophy.

As a result, Sean and other members of the Spencer family decided it would be a fitting tribute to set up a Family Fund in their family name in memory of their father to help raise funds into research for a condition that has affected three generations of their family.

Since setting up the Spencer Family Fund Sean along with his friends and family have raised almost £20,000 by taking part in the Rossendale Trialthlon, Great North Run and his daughter Ellie even had her stunning locks cut after growing them for 7 years!

Sean has big plans for fundraising in the future so watch this space.

Net proceeds from Spencer Family Fund will be split 80% for research into limb girdle muscular dystrophy and 20% for the family’s welfare

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