Portrait no.24

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24 of 26 Children’s author Suzanne Maguire was diagnosed with ALS variant MND in 2002 at Sheffield Institute for Translational Neuroscience (SITraN), which has large laboratories carrying out research funded by the MND Association. Suzanne is one of the remarkable few with MND still alive and relatively mobile sixteen years after diagnosis. Miles interviewed her at SITraN where she spoke about how it made her feel to have seen scientists working in the labs on MND research. “I’ve been here twice on open days and we have walked around the laboratories and seen the Zebra Fish they use for research, had each department explained to us and what they are hoping to achieve. It does make me very emotional because they are trying to find a cure and help people like you and I live a longer life. When I was diagnosed by Professor Pamela Shaw, I hadn’t a clue what MND was. My mother Eve was sitting behind me and she knew exactly what motor neurone disease was but I had never heard of it before. It was only when Professor Shaw began to describe it in detail and mentioned two to five years average lifespan that I realised it was so serious. The penny dropped and I realised it was a lot, lot more serious than I had anticipated. Initially I just had a weakness in my arms. Making cups of tea and carrying the tea bag to the bin I noticed a weakness. To be honest I never thought anything of it but thought 'hey ho, let’s go to the doctors’ and then five months later I’m being told it’s likely I’ll be dead in less than five years. I certainly see life in a different way as it’s made me more aware of my mortality. I was thirty-six when I was diagnosed and at thirty-six you are in the prime of your life! Now every day I wake up and I’m stiff, I’m weak. I find I’m relying on my loved ones more – ‘can you carry this? Can you open this? Can you cook? Can you vacuum?’. But I enjoy the birds singing, I enjoy our countryside far more. My mortality has been questioned. You don’t have the luxury of waiting until you’re eighty years old to sell up and get that cabin by the sea". . To help the work of the MND Association donate here https://www.justgiving.com/fundraising/26miles4mnd

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To support the work of the MND Association, donate here – www.justgiving.com/fundraising/26miles4mnd

or text ‘mmnd99 £5.00‘ (or whatever you can afford) to 70070 

Thank you 🙂

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