We are fundraising for a new wheelchair for Joseph. We are aiming to raise at least £20,000 by May 2018 so that he can have his new wheelchair in time for starting high school in September 2018.
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 is an Etac Balder and he has had this chair since he was 4 years old. He was fortunate enough to get this chair fully funded by the Joseph Patrick Trust from Muscular Dystrophy UK. At the time, they were Tesco charity of the year and therefore were in a position to fully fund wheelchairs. Unfortunately such funding is just not available any more.
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 £20,000.
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.
James and I are both running the Great North Run in September and hope to raise some sponsorship for his chair then.
Already nearly over £5000 has been raised towards the chair, which is incredible given that we only launched the fundraising a few months ago. This has been made up by kind donations along with proceeds raised by a cake sale organised by friends and sponsorship from some kind pupils in Year 6 at Joseph's school who did the radical run in sponsorship for his new chair. Many thanks to everyone who has already either donated or organised an event to help with his fundraising. It really is hugely appreciated.
Many thanks for reading and thanks to everyone for their ongoing support. Hopefully we will get there!