Michael’s arrival in the world heralded the diagnosis of Marfan syndrome in the family. His mother almost died whilst giving birth to him, after which it was discovered that she had the syndrome and Michael had inherited it. Michael has since undergone many surgeries but lives a creatively rich life with, and in spite of, his condition.
by Michael
My mum, Liz, passed away from complications of Marfan syndrome when I was 11. She was forty but didn’t feel that she had been dealt a bad hand in any way. She had a very happy life and tirelessly raised funds and awareness for the Marfan Association after her diagnosis. My mother was a nurse who really like to help others and she took strength from her job. My father supported her throughout.
I soon found myself going off the rails a bit after my mum died as, back in the 1990s, there was no counselling or support on offer. Fortunately, a renowned local youth worker, by the name of Ron Blenkinship, somehow created an amazing safe space for me to just be myself. He gave me the confidence to have a go at things to outlet my energy into creative pursuits like music and drama. This helped me choose my career, Youth Work, whilst in my twenties. I also played in bands including Radio Rivals and Saviours, and was a finalist in Preston Battle of the Bands.
Music has always been my passion and plays a pivotal role in my life. It helps me to keep a positive outlook when dealing with whatever is thrown at me. My mum was musical and I still have all of her old instruments too such as her accordion so it’s nice to use these instruments on songs when possible as it keeps her spirit going.
It was during a gig, while I was on stage, that I suffered a dissection. I was 27. I wasn’t sure at first what the pain was but decided to call an ambulance after I got home from the concert. I was taken to Preston Local Hospital, then Blackpool and finally Liverpool Heart and Chest Hospital. They were fantastic. Unfortunately, whilst replacing my aortic root and valve, they damaged my vocal cords and so I had to learn to speak again. This means I can no longer really sing. Seven years later I had a further operation to replace my mitral valve. I now have two mechanical valves. Fortunately these work very well as a loud metronome! I also have scoliosis and fibromyalgia. I have had four operations to replace a detached retina.
In September 2023 I launched the Preston-based label, Northern Delinquency, to work with local artists to promote and nourish homegrown music. I started the label after finding many barriers to support my output as a creative person who happens to have a disability. I decided to take matters into my own hands by building a studio from scratch with my retired dad, Bob, a skilled former joiner’s apprentice in his youth and jack of many trades. My music even appeared on BBC once the label was launched!
My dad had to step up and take on a lot when there was no support on offer after my mum died. He has helped me tremendously over the years with my recoveries. I suffered from severe depression, low self-esteem and anxiety as a young person and he has helped me through these bad times.
