Thirty six year old 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.

Sean says,

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. I didn’t want to tell anyone and couldn’t face up to the diagnosis. In fact I didn’t deal with it very well for another two to three years. I kept it very much to myself, bottled it up and tried to put my head in the sand hoping it would go away.

To compound Sean’s feelings he was also aware that his father also had the same condition. Over time, Sean began to accept his own condition and received counselling to help him cope with his diagnosis.

Sean and his family had their lives turned upside down again in 2015 when Sean’s father Roger sadly passed away aged just 55.

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 memory of their father to help raise funds into research for a condition that has affected three generations of their family and to hopefully prevent other families in the future having to deal with the impact of Limb Girdle muscular dystrophy.

Sean says,

We all feel that doing something in my dad’s memory will be a great way to remember him and to help others. While I have Limb Girdle muscular dystrophy myself, I am determined to do as much as I can with other members of my family to raise funds and awareness of MD. My dad, like me, loved a flutter on the horses so we are looking at organising a family trip to the races this year and making that into a fundraiser. I also intend to take part in the local triathlon again this year in Rossendale. I’m hoping to make it a bigger event and aim to get others involved too. I did this event last year and it was a great success. Other ideas I have are to organise a ‘Move a Mile for Muscles’ event and I am also investigating the idea of a Sportsman’s dinner evening as well as some other great ideas to get the ball rolling.


Setting up a family fund like the Spencer Family LGMD Family Fund is a great way to fundraise for Muscular Dystrophy UK to keep our vital research moving forward. Find out more about our family funds.


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