I am going to do something I said that I would NEVER EVER do. I'm going to run a marathon, yes a MARATHON!. So why the change of mind? It's simple, someone I know needs to raise a huge amount of money so I decided to do something big to try and help.
Nicola Whitworth was a housemate of mine at University and we've kept in touch ever since. Nicola's son Joseph has SMA Type 2 - I've copied Nicola's own words (below) from her fundraising page as she can explain the reasons for this campaign better than I can. Nicola, James, their family and friends have worked very hard to keep Joseph's life as normal as possible and in recent years they have raised thousands of pounds to buy him an adapted bike so he can join the family on cycle rides, eye gaze technology for games and school work and a portable hoist so that they can go away on holiday. However, he is now in need of a new wheelchair before he starts secondary school in September 2018 and it will cost a whopping £15,000. If I could manage to raise £2000 towards the overall target you would make me a very happy and unbelievably grateful woman.
I can currently run about 10K fairly comfortably but I've never pushed myself to run any further. I plan to run the Manchester marathon on April 8th 2018 and have also signed up for the Windsor Half Marathon on 24th September as a half way goal to aim for. I'll post updates on my progress here (for anyone that is interested).
Text from Nicola's Fundraising Page
Joseph is 9 years old and has SMA Type 2 (Spinal Muscular Atrophy). SMA is a life limiting condition which results in generalised progressive muscle weakness. He has never been able to crawl or walk, and over the years we have seen him lose strength in his arms, hands, neck and swallowing. He has a gastrostomy to help ensure he receives the calories and nutrition to keep him well. He also uses non-invasive ventilation at night to help with his breathing and to steer off potentially life threatening chest infections.
Despite all of this, Joseph is a beautiful, bright and cheerful little boy who does a terrific job of just getting on with life despite his severe disabilities. He has driven a powered wheelchair since he was 3 and loves participating in wheelchair football (the photo is of him with the trophy for the North West Powerchair Football League which his team recently won). He is also a very keen Manchester United supporter and he was lucky enough to meet the team at a dream day in October 2016.
Joseph's current wheelchair became obsolete a few years ago which makes finding parts for any repair work very, very difficult. We know that Joseph will need a new wheelchair to replace the Balder before parts are completely unavailable.
Joseph is due to start high school in September 2018. Discussions with his physiotherapist and the high school have suggested that the best way forward is a sit to stand chair. The school is not very accessible and feel it would be difficult to accommodate both his chair and stander, which he has to use on a daily basis for physiotherapy. A sit to stand chair is not available on the NHS and will be at least £15,000.
This is a huge amount of money to try and raise and so we are starting the fundraising now so that hopefully he will have his new wheelchair in time for starting high school in September 2018.
Many thanks for reading and thanks to everyone for their ongoing support. Hopefully we will get there!