Burty's MND Fundraiser

We're fundraising to help cover costs for equipment that are anticipated due to a devastating diagnosis of MND. Christian Burton (affectionately known as Burt) is a long time musician and supporter of the local music scene in Worcester and a hugely talented graphic designer and artist. Last summer he started experiencing some strange weakness in his arms and legs that he thought was nerve damage but, after investigation and clinical consultations, at the end of November he was diagnosed with Motor Neurone Disease. Obviously this is a terminal illness with a relatively unknown prognosis, but an estimate of 2 - 5 years from onset of symptoms. The past six months have been surreal to say the least, everything has changed; from where we live to how we live. Burt can no longer live unaided, his mobility is rapidly deteriorating and he obviously can't work. Every day brings new challenges, both physically, mentally and emotionally, as we struggle to keep up with the disease's progression. He now needs to use a wheelchair full time when not in his riser /recliner armchair, lives in an adapted bungalow and we are currently waiting to get a WAV (wheelchair accessible vehicle).

So, to the money side of things. Financial support is there for him in the form of PIP and ESA to cover day to day living but is otherwise limited as it is means tested and as I (his partner) still co-own a business we aren't eligible for much. We haven't really wanted to fundraise yet as a) it feels weird, and b) we haven't been sure about what he needs, and we still aren't to be 100% honest. However he has been looking into Eyegaze technology for art and music, and we know that the wheelchair provided by the NHS, while amazing and functional, isn't quite as practical as he had hoped it might be, and is limited when it comes to comfort when outdoors. So we thought we would get the ball rolling on raising some money for those things, feeling slightly more comfortable about it as these are things that can be donated on after he doesn't need them.

Any money not used for specialist equipment for Burt will be donated to the local MNDA group which is entirely volunteer run and will use 100% of it to support other individuals with MND in the Worcestershire and Herefordshire area.