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 Myofibrillar Myopathy 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 a variant of 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 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 positive step to set up a Family Fund in an attempt to raise money and awareness of this rare condition that had affected their family.

Sean says,

We all feel that doing something positive will help. By raising awareness and fund raising is a great positive step. Although I have muscular dystrophy myself, me and the family are determined to do all we can to help raise funds and try and combat this cruel disease.

“To date I have taken part in the Rossendale Triathlon on three separate occasions as part of a relay team. The first year, 2016, was just one team, but in 2017 and 2018 I was able to get other friends involved and entered more relay teams and in 2018 we managed to raise almost £5,000 from the event. Watch this space for more in the future!”

Over the coming months, Sean and friends will be looking at other creative inspiring ways to raise money.

In addition, other family members and friends have taken part in a number of charity events, these have ranged from chest waxing, sky dives, annual charity collections, to cake sales.

Sammy Spencer, Sean’s sister, also organised a skydive in March 2018 in support of the Spencer Family Fund.

How can you help?


Donate to the their Just Giving page


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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