Thirty Seven 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”

Over time, Sean began to accept his own condition and received counselling to help him cope with his diagnosis. This was a lengthy process and took time for him to accept the condition.

Sadly however; 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.

“Following my diagnosis and the death of my father, I wanted to do something positive. I wanted to make a difference and attempt to help with finding a cure for this condition.  I spoke to other family members and we all felt that doing something positive in the family name was a great way of helping remember Dad and hopefully try to help others”

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.

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. Although I have Limb Girdle muscular dystrophy myself, me and the family are determined to do all we can to help raise funds and awareness.”

“To date I have taken part in the Rossendale Tri-Athlon on two separate occasions as part of a relay team. The first year; 2016, was just our team, but in 2017 I was able to get other friends involved and entered three relay teams. In 2018 I’m aiming to make this bigger and better. Watch this space!”

In addition Sammy Spencer, Sean’s sister, organised a charity chest wax which also helped raise more funds. 2017 has been a great year and the fund has raised over £5,000. In 2018 the family aim to arrange additional fund raising events.

Setting up a family fund like the Spencer 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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