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Living with aggressive full blown dystonia which causes me so much pain am wheelchair bound
I'm 42 and I've been told that there is no cure , please help me to have alittle more time to make memories with my wife and children & Granddaughters.
It took me quite a while to come to terms with my horrible disease which affects my speech, voice, my legs and feet have turned inwards and my left hand has turned in also, so with the recent news we've had with regards to my health has really got me down and depressed and sometimes dont want to live. It has done the same to the family my supportive wife and our children. . It has put life into perspective for all of us.
We've had a pretty bad few years between losing my father inlaw to cancer my wifes family says she can do better than go with a cripple in a wheelchair imagine marrying that thing they said. But at the same time it's been the most memorable. We've had the best day ever, getting married and having now been together for 10yrs they still dont like it and keep trying to split us up, my wife suffers from depression, paranoid schitzophrenia, bipolar, and ptsd that no one could forget we both have saved each others lifes over the years from death. It all started with things going really well, life was going well and in the right direction. Then out of nowhere we were caught out by a life changing event which gave us a slap in the face.
It started with a me having seatica & severe nerve and spinal damage due to my motorbike accident when i was left for dead . This lead to me ending up in a coma for 6 months with loads of tubes etc breathing machines and also having to learn to talk eat remember who people was then following scan appointment which showed the horrible mess that my memory was left in. first appointment was to try and see how far my mental age was , then came the doctors and surgeons saying that i will need more serious operations with dangerous complications,
i was diagnosed 5 years ago Severe Tremours in my body As a family we have tried to carry on as normal and as best we can, as a family we have decided to share this with everyone we can as we are still holding on to a little hope! Through endless amounts of research between ourselves, family and friends which has had amazing results but unfortunately comes at a huge price with no cure and not available on the NHS or even in this country. So once again we go up and back down.
This treatment can prolong lives considerably and has even put incurable like mine As we face the impossible task of funding the big task to see a smile as a reward on the sick and seriously ill kids and adults we are pleading for help to raise the necessary funds. We have been told it comes at a costly £40,000.for 2 disabled adapted caravans to help sick children and adults who are dying from cancer and who have dystonia to give them and there familys a free holiday Any donations no matter how big or small will be appreciated beyond words!
So, now is the time to ask the biggest question that I have ever had to ask.
we need your help. As a family, friend, colleague, and even stranger. we
need your help and even down to a donation of a pound I will appreciate that as much as i do several pounds!
Please respect our wishes in doing the best we can to protect our children's and grandchildrens ears. Life is tough enough for them seeing their dad unwell and there mother doing all she can for me considering what she has also been through.
A big thank you for reading my story!
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About the fundraiser
Fenwick, Kilmarnock, UK
story is about my hubby and his wish to do good for others he has suffered enough trying to do his hardest to set up a scottish charity to no ovail as he suffers dyslexia in filling in the oscr and scio forms to do the caravan holidays for disabled and sick and seriously il
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