Neil - A comprehensive update

If you’re a regular listener or visitor to this site, you will know about my oldest friend (Nelly) Neil’s situation. Neil is 45. I met him when I was four.

While I promised my mum my still unpublished novel would bring us riches beyond our dreams, enough wealth to see me retired by 22 and living in a riverside apartment, Neil went onto get married and has four young children. He also had a depth to his facial hair (from an alarmingly early age) that continues to elude me to this day, which is particularly cruel for me when since the age of four, I have been obsessed with facial hair owing to Lee Majors growing a 'tache for the last series of The Six Million Dollar Man.

 

While I try not to let my frustration with my own facial hair shortcomings distract me from ploughing on through the toil of everyday life, Neil is fighting Primary Progressive Multiple Sclerosis. These days he is unable to talk and is bedbound.

There is only one place in the world that can give him a chance of living to see his kids grow up. The Shaarei Tzedek Medical Center in Israel has offered Neil Haematopoietic Stem Cell Treatment (HSCT) which has been shown to stop the progression of this debilitating disease.  Many patients who have travelled abroad have not only seen the progression of their illness stopped but many of their symptoms have been reversed. Neil has been offered a July appointment, pushed back from May, so as to give the family more time to raise the necessary funds. The cost of this treatment is £90,000. So far, Neil’s family are £70,000 short of raising the money required and they have just two months left.

On this Expanded Disability Status Scale, Neil currently stands at an 8.

No other clinic in the world will treat an MS patient who scores 8. If Neil goes over the 8, not even the Shaarei Tzedek Medical Center will treat him and all money raised will simply go into palliative care for my old friend at home.

The Get Neil Walking campaign can be supported here: getneilwalking

Neil can also be followed on twitter @GetNeilWalking

I also want to point you in the direction of great things Neil’s family and friends are doing to try and get this kind man to Israel for life saving treatment.

Neil’s two youngest children, Esme and Ewan, did a sponsored walk of the South Downs this weekend to raise money for the campaign.

Proceeds from download sales of the Dispossession: The Great Social Housing Swindle, written and recorded by Mickey O’ Brien, go to Neil’s campaign.

Click here for that: Dispossession

Graphic artist Fiona Boniwell, who went to secondary school with Nelly, has been taking on portrait/artwork commissions, with all money being donated to the Get Neil Walking campaign. You can find Fiona’s work here. Kinsale

I want to take this opportunity too to collect a few of the shows and videos I’ve made about Neil since 2014.

One of the first podcasts I recorded about Neil came on 22 December 2014, Ep 22 of my daily ‘Daniel Ruiz Tizon’s Advent Calendar’ podcast for the Hold Fast Network, in which I recalled what is still one of the greatest days of my life, when, with just nine days left of the eighties, Neil and I were handed the responsibility by my dad of bringing back the first television with a remote control to appear in the family bedsit. The day turned out to be an unforgettable odyssey.

You can listen to Christmas episode below.

This year, following contact with Neil’s family, episodes 161 to 175 of my Daniel Ruiz Tizon is Available podcast picked up the story of Neil’s situation with a regular feature, ‘Nelly, Remember This?’ in which I reminded my friend of our old life growing up together in Clapham. These 15 shows can be found at these links.

Available 161 - 174

and

Available 175

Then, on a somewhat moving day back in March, I returned to St Mary’s RC Infants and Juniors in Clapham, southwest London, where I first met Nelly in January 1977. The school were kind enough to allow myself and another old friend Micky Boyd to visit. Both Micky and I failed to pick up on my wonky coat hood but despite this wardrobe malfunction, we worked our way through the school playground and buildings as I recalled what were three very special years there at the start of my long friendship with Neil.

Watch the film below.

Lastly, if you have found this post interesting enough to want to publicise it, then please can I ask you to copy and paste the tweet below and tweet it yourself if you have a twitter account. With my account security settings set to private, my tweets cannot be retweeted and I do want this comprehensive update on Neil out there.

Neil is fast running out of time. A man may lose his life as things stand. A wife will lose her husband. Four young kids will lose their dad. And a bunch of people will lose a friend they will recall stood out for his kindness. Life has turned out to be rather cruel for him.

Nelly is a friend I love dearly.

Thank you for reading this.

PLEASE COPY AND PASTE THIS TWEET

A full update on @GetNeilWalking's battle with Primary Progressive #MultipleSclerosis, via @1607WestEgg. Please RT. goo.gl/vqocbz