The Spencer family set up their Family Fund in memory of Roger Spencer, who had limb girdle muscular dystrophy and died at 55. His son, Sean, who was diagnosed with the same condition in his early 30s, shares why it’s so important to them.
Spencer Family Fund
I returned from a year’s travelling in my mid-twenties and could not get my fitness back to where it had been before I went. At the time, I just thought I’d had too much of a good time travelling and that it would come back. In hindsight, this was probably the start of my muscle deterioration, but I put it down to being generally unfit.
I was 30 years old when I first noticed signs of weakness in my legs. As someone who had a real passion for sport, I found it particularly worrying. I went for various tests at this point, and I was confirmed as having limb girdle muscular dystrophy at the age of 31.
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 my diagnosis difficult to process, over time I began to accept my condition. Sadly, in 2015, my family and I had to deal with the death of my father, Roger Spencer, aged 55, who was also affected by limb girdle muscular dystrophy.
As a result, my family and I decided it would be a fitting tribute to set up a Family Fund, in memory of my father, to help raise funds for research into a condition that has affected three generations of our family.
Since setting up the Spencer Family Fund, my friends, family and I have raised almost £25,000 by taking part in several triathlons, the Great North Run, Lidl Mudder, a skydive, and my daughter Ellie even had her hair cut off after growing it for seven years! I’ve got a wheelchair space in the Great North Run coming up soon which is very exciting. My friends and family will be supporting me with this.
We have big plans for fundraising in the future, so watch this space.
Net proceeds from the Spencer Family Fund will be split 80% for research into limb girdle muscular dystrophy and 20% for the family’s welfare.
