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Steven Williams raised £23,518.95 from 220 supporters

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Closed 20/07/2018

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£23,518raised of £30,000 target by 220 supporters

    Weʼve raised £23,518 to help Steve Williams pay for investigations and treatment for his motor neurone disease.

    London, United Kingdom
    Funded on Friday, 20th July 2018

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    Story

    Hi all, so I have some amazing news, my amazing pal Ricky Wilde mentioned my cause to a couple of friends of his, who then said that they wanted to donate. So what they did was to make up the shortfall of £6582 to my target. Then they said they also wanted to pay the Just Giving fees, which are 5%, for the whole £30,000 , so donated a further £1500.

    I don't think I can say who they are, but what they are is a couple of unbelievably generous, and altruistic people, who deserve happiness ten fold. Karma will donate immeasurably to this couple. And if they are reading, again and again I thank you xxxx.

    So now I have reached my target, I can close this campaign. So may I thank every single person that donated. I will post on Facebook how my investigations are going. The project lead is spending quite a lot of time on my case, and we expect to have some answers with hopefully a treatment in about 2 months.

    If anyone wants to contact me directly, please feel free on steven.a.williams@mac.com

    Love you all xxxx

    PS I will leave this page up for a day so people can see this message.

    Story

    On 9 January 2017, aged 51 years old, I was diagnosed with motor neurone disease - MND also called ALS. It is a terminal illness with no cure.

    The disease affects people in different ways, and I have the bulbar version. This means it affects my swallowing, speech and eventually my breathing. I find swallowing difficult and often choke on food, drink and even my own saliva – ouch! It isn’t a pleasant sound, as I struggle to take a breath and manage to get the tiniest amount of air into my lungs, enough so I can cough in the hope that it clears the blockage. So far I haven’t failed, else this would be a very short piece of writing. Tongue control is tricky where pronunciation suffers. My limbs are still functioning, although there is muscle wasting and I look less like Charles Atlas as time passes. One of the other symptoms of my condition is fatigue, which means I work about 20% of what I used to.

    My first diagnosis said I had a form of MND that has a very quick progression, with 6 months to 2 years life expectancy. Not a great thing to hear but after further tests and a visit to the amazing neurology unit in Kings College Hospital, the experts decided that I have a form of MND that progresses more slowly so you can imagine a mini woopee from me, my wife and eventually when we told him my 14 year old son.

    So with that news I set to work to understand as much as I could about this horrendous disease, spending hours each day on research. I have met some amazing people sharing ideas and hope on forums across the world. There are many experimental treatments from studies around the world. Some offer respite from the symptoms, but others have failed - none are curative. I know, as I've tried many of these costly treatments out.

    One particularly brilliant friend of mine suggested getting my genome analysed to try to discover the cause of my particular MND. Each case seems to be different and current medical thought is that MND should be treated with a personal medicine program for each individual case. Through private testing, I now know that all the genes that have so far been found to be responsible for MND are not affecting me, and apparently scientists are nowhere near discovering even half of these. There is however one gene called CYP1B1 which appears to be a big issue for me. We need to do more specific tests to understand exactly how this gene is affecting my MND so I can be treated. Unfortunately, testing of this kind isn’t available on the NHS - I have asked many times in different ways to different doctors. We can, however, carry out the investigations without the NHS, but the project needs funding. And although the nature of the testing is individual to me, we will share the methods used to potentially help others for their own personal medicine approach.

    Here’s the crunch – having paid for treatments over the last year I now need to fundraise to continue the investigations. The analysis I am getting for free from the extremely talented and intelligent project lead from Mitravitae , but I would have to pay for laboratories, equipment and staff, which are as you can imagine very costly. Please help us raise this money as quickly possible. Time is not our friend with the disease continuing to progress. I can’t do this without you.

    Thank you for reading this far. If you feel you can help, then I would be eternally grateful - hopefully from an earthly perspective rather than a heavenly one.

    Steve xxx

    Updates

    232

    • Steven Williams4 months ago
      Steven Williams

      Steven Williams

      4 months ago

      Thank you Sharon Hyland Fitzpatrick, it's never too late. Right, that's my philosophical pondering done for today. I have now reached my target so have asked JustGiving to take the page down. Hope you're all good over in Eire. Say hi to my cousins. Take care, Steve xx

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    • Steven Williams4 months ago
      Steven Williams

      Steven Williams

      4 months ago

      Thank you Sharon Gosler, really good of you. I have now reached my target so have asked JustGiving to take the page down today. Hope all's well with you. Steve xx

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    • Steven Williams4 months ago
      Steven Williams

      Steven Williams

      4 months ago

      Seems the only way to stop a JustGiving campaign is to schedule the cessation, which I have done for tomorrow. Ta xxxx

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    1 year ago

    Steven Williams started crowdfunding

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    Page last updated on: 7/20/2018 6:26 AM

    Supporters

    220

    • Sharon Hyland Fitzpatrick

      Sharon Hyland Fitzpatrick

      Jul 19, 2018

      Sorry it's late Steven, I wish you all the best.. lots of love xx

      £50.00

    • Sharon Gosler

      Sharon Gosler

      Jul 19, 2018

      Wishing you all the best.

      £50.00

    • Marcel Rijs

      Marcel Rijs

      Jul 16, 2018

      Hi Steve, I auctioned a phone decorated by Kim Wilde, which I owned for quite a few years actually, on Twitter. The auction was won today by Marco. It's Another Step to get you Closer to your goal! :)

      £230.00

    • Dave Fallows

      Dave Fallows

      Jul 15, 2018

      Hi Steve i have been a Kim Wilde fan for just a few weeks tbh i have watched certain documentaries on her and can clearly see she is an amazing woman. Anyway brother heres a little something from me.

      £30.00

    • Al Lockhart

      Al Lockhart

      Jul 14, 2018

      Good luck with your treatment Steve

      £10.00

    • Ricky Wilde

      Ricky Wilde

      Jul 13, 2018

      This was the net result from the sale of Kim's Japan Gold Disc that was auctioned on eBay. Thanks to Marco Belatti for such a generous bid, and of course huge thanks to Kimmy. xxx

      £2,073.95

    • vincent meulemans

      vincent meulemans

      Jul 13, 2018

      Hello i pay for a friend from netherlands . She want to made a donation but she doesn’t have a credit card . Her name is Tamara van haaren .

      £10.00

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    Steven Williams

    Steven Williams

    London, United Kingdom

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