This is not an easy post to write. I feel a need to write with some haste but with great care also because the tone needs to be correct: arresting yet affirming but not mawkish.
An important post; I make no apology that it is longer than my usual fare. You will understand why soon enough. Please read it carefully and if you are inclined to share it, then thank you.
DO FISH FART?
I have no idea, but isn’t this the point of such a question? A funny imponderable and the name of a TV show that I hosted way back in 2004. Alas, it only lasted 3 episodes but something positive has finally emerged from it when I recently rekindled an acquaintance with the show’s director, Mr Mick Thomas.
At the time of filming, we both had young families. Mick’s eldest son, Oliver was 15. Tom would have been eight, my twins 5 and Paddy had yet to be invented.
But my experience of parenting has been vastly different to Mick’s and not because of Tom’s foray in to acting but because Oliver has a condition called Epidermolysis Bullosa (EB). And a variety of the disease that is the most virulent and life limiting. Many of you will be familiar with James Dunn. James had the same condition and died in 2018 at the age of 24.
Anyway, our TV show was cancelled and we all parted company; dusted ourselves down and moved on to pastures new. Some lush and some barren.
And then, about five years ago, I was invited to a Golf Day to support a charity I had never heard of, called DEBRA.
The Brothers Trust hadn’t been established at this point but its seeds had been sewn and on learning about DEBRA and EB, we had found our first cause to support.
Mick Thomas was one of the organisers of that golf day. I hadn’t seen him since since our ill-fated TV show. Mick was sanguine in updating me about Oliver and his condition. I hadn’t met Oliver at this time and didn’t really understand the gravity of his health. But I explained to Mick our plans to establish a charitable trust and I made a bold assertion.
I told Mick – with Tom’s celebrity, that we would make a difference to DEBRA.
And although since then we have granted £152,000 to DEBRA, I now feel we have some way to go on delivering on my promise and I mean in creating better awareness of the disease, of DEBRA and the work that they do.
This blog can be a start in this quest. A small first step and why I am asking my readers to become involved and lend their support.
Chatting with Mick this week, I felt this need very clearly and I asked his permission to write this blog.
We were at the same annual golf day – at Surbiton Golf Club in West London to raise funds for DEBRA. But this time, Oliver was in attendance with his indomitable mum, Sarah and his younger sister, Sian.
No offence to Oliver but he was not the star attraction – that honour wrestled from him by two football luminaries.
The photograph of the three men here speaks volumes on its own.
Growing up in Britain, it feels ludicrous that I need to introduce the two gentleman flanking Oliver – as famous and illustrious as they are. But since I have many readers in America and beyond, I must assume a scant understanding of soccer greatness.
On Oliver’s left is Graham Souness, Liverpool FC captain and legend, with as much silverware as Hilton Hotels and on his right is Ryan Giggs, the Manchester United icon. The Welsh wizard and arguably United’s greatest player of the last three decades. Right up there anyway with Christiano Ronaldo and Eric Cantona.
It is a lovely photo and for so many reasons.
That Oliver was present on the day is remarkable and more on this later. But it is a poignant also for how it exposes the uncertainties and the frailties of life. The way that our genes align and how such biological lotteries determine our futures. Graham and Ryan are mightily blessed by their good health alone, even without factoring in their bountiful talents which have served them so well.
But Oliver didn’t have such good fortune. A quirk of nature saw to it that Oliver’s life would always be constrained and as a way to highlight the importance of DEBRA, I would like to pay tribute to Oliver and to his family.
Once The Brothers Trust was established, we started doing events around Tom’s film releases and of course we invited Oliver and his family.
The first time I met Oliver was at a screening to Spider-Man Homecoming and I was frankly not very well prepared. Until then, Oliver had been someone I had only ever spoken of and only in a cursory way. And without ever understanding the grave nature of Oliver’s condition and how debilitating it is for him and for his family.
It seems cruel to play disease Top Trumps. Which disease is the most pernicious? But given that the skin is the body’s largest organ and that it covers us internally and externally, when the skin is as fragile as tissue paper and blisters and tears as easily as a Butterfly wing, then we can all agree that EB is a wretched plight and a rusty pin to burst the woe-is-me bubble that we all bear to some extent.
Oliver has just celebrated his 31st birthday, a life far longer than Mick and Sarah would have been told to hope for when he was born. A life of permanent pain and often agony for Oliver and I would venture, as painful also for his brave parents and sister.
Oliver has recently been diagnosed with the same skin cancer that afflicts so many EB sufferers and what ultimately ends their life. After this year’s event, Mick emailed me with this news and why it was so heartening that Oliver could attend. Defying the medics and keen to meet his sporting heroes no doubt.
That Oliver has lived for so long is surely a gift and a testament to the love of the Thomas family. I choose the word gift deliberately and carefully because despite the very obvious pain, I am sure that Oliver’s life has provided many laughs and shrieks of happiness that all loving families enjoy. I am in touch still with Leslie Dunn (James’s mum) and she speaks of the hole that James has left behind and how she misses him.
And in terms of bubbles being burst, I can’t help but reflect on my own. No doubt, I would have been bitterly disappointed by the failure of the TV show and the other irksome false-starts and rejections I have endured since. But nothing on a scale to take to Mick Thomas in dealing with Oliver’s hardship. To put this in to perspective: I vividly recall one Brothers Trust screening which needed to start early – people seated in the cinema for a prompt 9am start. It would be great to have Oliver along until Mick explained that changing his dressings can take up to four hours to complete and that 9am is just too damn early. I thought of the fraught mornings with the four Holland boys. Or what I thought were fraught, anyway. Trying to find matching socks was my great tribulation and so listening to Mick, I felt chastened.
Four hour dressing changes every other day and the pain associated with it. I crumple with a single mouth ulcer and feel a need to show anyone willing to look the scorching white dot. No foreign holidays. No watching his son playing football or teaching him to swing a club. Not to mention the myriad surgeries that Oliver has endured. Twenty major procedures and countless others to sever fused joints and ultimately to remove parts of the body that are just worn out and no longer viable.
Pictures are worth a thousand words, as the saying goes. And true enough because anyone looking at Oliver as a beautiful young child will fully understand the life of an EB sufferer. But this is not to say that Oliver’s life is not every bit as worthy as mine and yours. Oliver’s mum, Sarah, would be the first to extol the virtues of her beautiful son no matter that his body has been ravaged by EB. Nikki attended a dinner for DEBRA at the beautiful Stafford Hotel in St. James’s, London and heard Sarah speak. She was impassioned, stoic, overwhelmingly kind and proud of her son. Nikki was mightily impressed by her fortitude and her presence and it galvanised our determination to help their cause.
The prospects for Oliver are dire. A terminal diagnosis that his parents have long been prepared for and become inured to. A tough life of unimaginable hardship and pain. But a life well led and certainly not in vain.
And thank goodness for the clever kids at school who we can all recall and we all admired. The brilliant boys and girls who go in to science and research determined to make our world better. DEBRA is fully immersed with these endeavours and now full medical trials are underway to find elusive breakthroughs. And what achievements these will be? Worthy Nobel prize winners, for sure.
I wrote recently about the movie, The Peanut Butter Falcon: a beautiful story of an unlikely friendship between a rough drifter and a man with Downs Syndrome. It reminded me of a man called George who loomed large in my childhood. George lived locally with his elderly mum. George had Downs and always brightened my day with his enormous smile and happy wave.
When Nikki was pregnant with Tom we were offered a special scan to determine what chance our baby had of being Downs. We didn’t take up the offer because its outcome would not have altered the course of the pregnancy.
When I met with DEBRA I was keen to understand the thrust of their medical funding. I wanted to learn that they were interested in finding a cure for EB and not a method to identify the disease in the womb and thereby a way to eradicate EB. The full life of James Dunn and Oliver Thomas counter this option, even though I fully accept the extraordinarily heavy burden that EB serves and that not all parents will be as capable of making such a success and against such odds.
Until a medical breakthrough is achieved, the thrust of DEBRA’S energy is to support the families afflicted by EB. To offer the young mums and dads the essential support needed. Even having a healthy child is an all-encompassing experience and I cannot imagine how frightening and bewildering it must be to have a child who is not healthy and whose best option is only pain management.
Mick and Sarah Thomas and their two children, Oliver and Sian are an example of great humanity to us all. A familial bond. A determination and a clear demonstration of love over extreme adversity.
EB is thankfully rare. But this is scant consolation to the unfortunate families afflicted by it. Of course, charities need funds to pay for the nurses, the medicines, the counsellors… but such funding is a factor of recognition.
Until that golf day I attended, I had never heard of EB and yet in the UK the number of patients with EB and Cystic Fibrosis is the same.
And here we are again with Charity Top Trumps… but you see my point?
It seems an anomaly that EB has somehow fallen through the cracks. And doubly cruel because charities do compete with each other for finite funds and their prospects are constrained by their awareness.
And so to the thrust of this blog and why I wanted to write it.
What a worthy legacy for Oliver Thomas if from his life can spring a better awareness of EB and the charity that he has depended on.
Sure, if you have spare funds you can commit, then your money will be gratefully received by Debra, a charity who works with sufferers across the world.
But if not, then you are still in a great position to help. By reading this blog you are sufficiently connected to lend your support. You can share this blog. You can follow Debra on twitter @charityDEBRA, FaceBook and Instagram @charitydebra. You can visit the Debra website www.debra.org.uk and like/share their photos, videos… use the #fightEB and help to create the awareness that is essential for them to succeed.
The science behind this disease is no doubt, fiendishly complex and only for the boffins in white coats. But the equation I am writing about here is simple enough for us all to grasp…
The more people knowing about EB – the better the prospects for DEBRA and people like Oliver. And if in small part this awareness is increased by Oliver and his family, I am sure this will gladden Oliver’s heart and salve his pain more effectively than even morphine.
Mick hasn’t played golf in five years.
He claims because he had one terrible round.
But I wonder if Oliver’s plight and worsening health hasn’t been a factor?
I might be wrong of course but I am determined to get Mick out on the course again. This is a bold assertion and especially since we have never even played before.
But my game is terrible too and yet I still come back to it. And if I can use my ineptitude to tempt Mick out again, then there is much fun to be had in our occasional ‘great’ shots and I think Oliver would love this to happen too.
Two old blokes hacking about and musing on imponderables like…
Do Fish Fart?
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It would be wonderful if Debra see an uptick in their social media platforms this week. A tangible number for Oliver to enjoy and feel proud of. Thank you to any readers who share this blog and encourage their friends and networks to find DEBRA and give them a follow. Thank you. All comments of support welcome also.