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