Michaela has Spinal muscular atrophy (SMA) – which is the leading genetic cause of death in infants and toddlers. Read her story below to find out more about why it could really make a difference to Move a Mile for Michaela.
“It took my sister when she was 14 and my SMA has meant I have never been able to sit unaided. I have used a wheelchair since I was one, and my lungs are severely damaged from repeated pneumonia. I am now 24 and use a life support machine to sleep. I also have a machine that coughs for me, and need assistance with almost everything. Despite that, I graduated with a first class honours in PR from Ulster University last year. I am currently completing a Masters there in Communication with PR, specialising in Political Lobbying, and have just submitted my PhD application.
I always dreamt of completing a marathon and now the Police Service of Northern Ireland (PSNI) have agreed to assist me in creating a route across Belfast – taking in my university and both hospitals, which have saved my life so many times. On 21 June 2015, I will complete it in my powered wheelchair, with different people joining me at each mile. We will end the marathon by going up the Hill at Stormont, hopefully with as many supporters as possible joining us for a Move a Mile event.
SMA belongs to a group of conditions called neuromuscular conditions. They are progressive, and all treatments are still in trials. The route to treatment is not straightforward, and it often feels like we will never make it – but science is making very real progress forward. Likewise, every day in a body where muscles don’t work, is tough. It is a literal marathon, every single day for us all, even with medication, treatments and more. Despite this, I know hundreds of individuals who are inspired by living life to the full.
This eight hour, or so event will fulfil my dream of completing a marathon and will also provide an opportunity for people to see that the true nature of my disability is not my SMA, but it is more to do with the societal barriers placed upon people with a this disabling condition”.
Please register to walk the final mile with Michaela or join her on her marathon route through Belfast City Centre and shake a bucket for Muscular Dystrophy UK.
For more information on the event or to find out how you can support Michaela, email Cathryn Gibson at firstname.lastname@example.org or telephone 07525 593669