Weʼve raised £65 to Ben's fight against Wilson's Disease!
- Funded on Friday, 25th May 2018
Crowdfunding is a new type of fundraising where you can raise funds for your own personal cause, even if you're not a registered charity.
The page owner is responsible for the distribution of funds raised.
Wilsons Disease-a rare genetic disease (1:33,000) which is an accumulation of copper in the body got hold of Ben in his brain. We have watched over the last 18months his personality and behaviour change and now his motor skills and learnt how debilitating this is. We have a great doctor who specializes in WD and our neurologist is now considered to be a "specialist in neuro wilson's" . Not many other doctors know much. It's hard. WD is cruel, seriously debilitating and different in every patient. Not one Wilson patient is the same. Ben's tremors have minimised which is a relief, the dystonia has hit him hard but we can see small improvments. Ben has a peg feed has shaken of phneaumonia, dispersed those nasty blood clots and is fighting. We have seen our Ben get worse before better, which is common and is the nature of the chelating drug penicillamine which he has to take and also the nature of the disease. Ben has been in hospital since December 2016 and remains. Ben started new Dimcaperol injections which we are hoping is the miracle we need.
Many friends have done some amazing fundraising over the last year and over the last few weeks with our Race night & Disco approaching (30 March) we have been asked many a times if we still have the Crowdfunding site so we have managed to re-activate it. All donations raised will help Ben in his treatment, recovery and care. This could be neuro physio, rehabilitation, oxygen chamber, holistic medicines, additional care, and any other help we may find we need along the way.
Ben has often liked a flutter and this is one gamble that we know he is going to WIN!
Any monies not used will be given to the charities that help Ben along the way. Thank you for reading and please feel free to share this page.
THANK YOU ALL FOR YOUR CONTINUED SUPPORT - WE REALLY DO APPRECIATE IT. YOU ARE ALL AMAZING.
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samantha panchal started crowdfunding
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Apr 24, 2018
Sorry I wasn’t able to come to the race night so would like to donate instead. So glad it was such a success x
Mar 31, 2018
You are in our thoughts and good wishes. I am praying for you recovery and better health.
Mar 23, 2018
Good luck for the future.
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