Come on people, let’s do this…

Screen 30064

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?

*

 

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. 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

55 Comments

  1. Poonam September 20, 2020
    Reply

    There are no words to say . But felling bad about him so what can do for him so I can and I will do

    • Kelby September 20, 2020
      Reply

      I love what you’re doing. This article has really brought light to what’s happening, and I want to do everything in my power to help.
      Keep doing what you’re doing! xx

      • Michelle September 21, 2020
        Reply

        It’s beautiful what I’ve read, I admire these people! :’)

        • Sejal September 21, 2020
          Reply

          DEBRA is an amazing initiative and I would love to be a part of it. Being a university student in research field it brings me so much hope and positivity that we as students can surely work and find a cure for EB and make someone’s life better 🙂

    • Marianne Velasco September 20, 2020
      Reply

      I loved this post, I love the way you express everything and the value of everything and the God’s gift: life. I bless Oliver and his family and every person that needs these kind of help. I love Tom so much and admire his kind heart and his family also. God with you all.

      • Michael September 21, 2020
        Reply

        THIS kid its so brave and I love the way of how they do even they are in hard time they always know how to fight i love it

      • Janki September 21, 2020
        Reply

        Thanks to everyone holding up and on, though it’s a lengthy but it’s worth reading. Its not just a blog but all the feeling out from heart. The bravery it takes to bring such an awareness is huge. It’s inspiring and teaching. Thanks for the blog but more thanks to the feeling it’s brings.

    • Kya Rose September 21, 2020
      Reply

      Thank you for sharing this with us. It’s so important and has inspired me beyond belief. I’m so glad for the blessings I’ve been given, and proud of how much I have to grow. The intimacy of your writing is incredible, which is why your impact is so great. Thank you for all you do, and thank you for sharing.

    • Clifford Esmiol September 21, 2020
      Reply

      Good on you for bringing attention to this and supporting such an amazing cause. Your son, Tom shared this on his Instagram and I’m happy I took the time to read. You raised a kind and genuine young man and he is doing great things. I am happy and honored to share this on my social media account. Stay safe during this time of Coronavirus and God bless.

    • Muhammad Murshid September 21, 2020
      Reply

      Wow! I didnt know about such illness. I salute u for writing about it so we can help even by sharing.. Indeed God graced us with health, Health is the greatest fortune and we should be thankful for him. I hope they find a cure to EB .And please send my love for Tom.. he is great person I hope to meet one day

  2. Vanessa September 20, 2020
    Reply

    It is a very moving and sad story of course, but it makes you see life differently and telling you we are going to help, with what you can but help, at my young age then we complain about insignificant things, knowing that these diseases exist, but now even though I do not have to donate, I will share the blog to raise more awareness.

    • Harshita September 20, 2020
      Reply

      So sad to hear that, i was literally not aware of this disease. So what we all can do for him, I will try to help.

    • Eloisa Rain September 20, 2020
      Reply

      Hello, my name is Eloisa, I am from Chile and I translated all that text to see what it was and when I read it it changed my life I am 12 years old and I did not know that this disease existed but I think that taking the time to write everything is very good and explain to people to help with this bad disease that Oliver has I take the time to read and reflect on this as hard as for you and as for Oliver’s family I wish them well and if you read this my dream is to meet you I see All your movies and the new one that you made is great and I love you very much and I hope one day to meet you, greetings and take care❤

      • Natasha September 21, 2020
        Reply

        This blog inspired me so much! I really admire these people helping and I also want to help with the EB. It is really a terrible disease. May God bless Oliver! ; ) ♡

  3. DSynatzske September 20, 2020
    Reply

    I am blown away by this rare disease that I was not aware of. I googled, of course, to see how many children are affected by this disease in the U.S. and found that there are 200 cases a year. You did an admirable job in voicing your thoughts in EB and I will definitely be sharing and looking more into what I can contribute.

    • Veronica September 20, 2020
      Reply

      The willing to live of people suffering from EB is so inspiring. I don’t have enough economic resources to contribute with, but at least I can follow and support sharing! These stories really change the way of how you see live. I hope to be able to help more one day!

      Enjoying your blog from Venezuela x

    • Vinayak Bhattacharjee September 20, 2020
      Reply

      Thanks to all the kind celebrities like you for showing sympathy and love for common people. Lots of love ❤️
      From Vinayak

  4. Lorraine September 20, 2020
    Reply

    What heartbreaking photos of Oliver. Such a terrible condition to have to live with. The Brothers Trust have carried out fantastic work to highlight EB, particularly James’s story and of course raising much needed funds. Thank you for making us stop and think and help when we can. Take care all

  5. Sydnee Coleman September 20, 2020
    Reply

    Beautifully done Mr. H, thank you for making me teary-eye this early in the morning. I’m a little low on funds at the moment but I will follow Debra and I will share this blog

  6. Rachel Conrad September 20, 2020
    Reply

    The Brothers Trust is absolutely incredible. I say that a lot, but every time I’m reminded by what you do for people and organizations battling an uncommon foe, I believe it. I also thank The Brothers Trust for making everyone feel like they can help. Sometimes, it’s more than the money. It’s a like, or a retweet, or a share, or a follow, or just starting a conversation.
    Thank you for this special blog!

  7. Regina September 20, 2020
    Reply

    Thank you for making it clear that all people are a gift, whether they have a rare disease or other biological condition. It is encouraging to read, especially in a society (like America’s) that sees very little value in a life that isn’t “perfect.”

  8. Sonnie Wanderi September 20, 2020
    Reply

    I’m so touched. Thanks Dom for this. Send my greetings to Oliver and his family ❤️

    • Hana Khemaïssia September 20, 2020
      Reply

      Stay strong,courageous, be happy. Live your life like you want.Thanks to Tom Holland.
      By hana k

    • Nicki Sickles September 20, 2020
      Reply

      I will share and follow, and next pay will chip some in to help. What a terrible disease, and one that I had not heard of until I became a fan of Tom which led me to being a fan of the Brothers Trust, and the whole Holland clan actually. You guys are amazing, and help in such a unique way!. You guys focus on day to day living for these people and its wonderful. So many charities look at the “big picture”, which is important to the “future”, but what about the people that need help TODAY? You guys are awesome, and I will always help out any way I can. Lots of love

    • Lesley dunn September 21, 2020
      Reply

      Dom and all his amazing family are supporting debra so much, the difference they have made to the charity is overwhelming and I can not express how much we as a family thank them. I wish I could put pen to paper like you Dom and let all the world know how fantastic Tom and you all are, we really would be a lesser known charity if you were not involved. Please can you let Oliver’s mum and dad know I’m here if they need anyone to talk to xx
      Ps your doing our James proud

      • Dom September 21, 2020
        Reply

        Hey Lesley, lovely that this reached you. You and Kenny know better than anyone how God awful EB but also how fulfilling the lives of people with the disease can be. James was a fab young man. Thank you for your kind words Lesley. Much love, Dom

  9. Shaktii Rangan September 20, 2020
    Reply

    This is all so heart-warming. I’d love to give my support and help ease down sufferings like these. Thank you for enlightening us with this wonderfully written piece, Dom.

    • Hana Khemaïssia September 20, 2020
      Reply

      Stay strong,courageous, be happy. Live your life like you want.Thanks to Tom Holland.
      By hana k

  10. Harshita September 20, 2020
    Reply

    Feeling very sad to hear about this I was not aware of this, all we can do is pray for good.

  11. Lena Williams September 20, 2020
    Reply

    I’m not sure how much awareness my meager following will generate, but I’m surely going to share this! <3

  12. Márcia Malaquias September 20, 2020
    Reply

    I met EB through The Brothers Trust until then I was not aware, you do a great job and yes we will support DEBRA.

    God bless everyone and give relief to those who suffer with EB

    ♥️

  13. Vinayak Bhattacharjee September 20, 2020
    Reply

    Thanks to all the kind celebrities like you for showing sympathy and love for common people. Lots of love ❤️
    From Vinayak

  14. Vinayak Bhattacharjee September 20, 2020
    Reply

    Thanks to all the kind celebrities like you for showing sympathy and love for common people. Lots of love ❤️
    From Vinayak

  15. Malena September 20, 2020
    Reply

    I’m from Argentina and I don’t understand all, because my English isn’t good, but thank you Dom and stay strong Oliver♥️

  16. Giuliana Maisonnave September 20, 2020
    Reply

    I have just finished the blog. It reached Argentina, where I’m from. I just want to present my admiration and proud to all families who are fighting against EB. It must be known, it is a must. We can’t just pretend that nothing is happening, when it does. This is a battle which all the world must fight and support, or at least, be aware of it. I send you my support to Oliver and all families who are suffering❤️

  17. Evelyn camacho September 20, 2020
    Reply

    This is very captivating, Thanks to all the kind celebrities like you for showing sympathy and love for ordinary people.

    • Cizly Cortés September 21, 2020
      Reply

      I hope with all my heart that this blog achieves its goal with me it achieved it I am grateful to now have this information and I am very touched by Oliver and all the people who are playing this role
      I’m sure this really makes us more aware, I want to help as much as I can!
      I live in Mexico at the moment and here as in the whole world the disease exists, I hope I can help in some way I will do everything possible, now it is my new goal and I would also be delighted to one day attend that annual golf day in London, I am a preschool educatora and living the experience that way would be amazing, I would love to contribute as much as I can

  18. Avery September 20, 2020
    Reply

    Keep on fighting and do your best at anything you got this

  19. Leonie September 21, 2020
    Reply

    Wow, I didn’t know either….
    I wish you all the best Oliver♥
    Thank you for sharing and writing about this!

  20. Mortada September 21, 2020
    Reply

    I liked to offer my support and help. All this cools the chest. Thanks for all of this. Continue

  21. Maria Victoria September 21, 2020
    Reply

    What you are doing is adorable, I give my full support, I will do whatever I can ❤️ count on me!

  22. Bayleigh Resta September 21, 2020
    Reply

    Seeing someone like this makes me so sad but after reading this I know you always help anyone in need and that is what I always love about you guys. If I saw someone like this I would do whatever I could to make them feel happy. I just wish I could help all the people that have things like this:(

  23. Janet September 21, 2020
    Reply

    Thank you so much for writing this Dom. When I first started following The Brother’s Trust, I often wondered how it was that you chose to support Debra and the fight against EB.

    I have met a few moms who had sons with EB and hearing about their daily trials is unimaginable. Two of the boys are about 8 and 10 now, while one of them sadly passed when he was 2. I can only imagine how hard it is to be a parent of a child with EB. The community is small, but strong! Thank you for bringing attention to this cause and my hopes that the more people who understand this disease, the more we can do to help find a cure!

  24. mredul September 21, 2020
    Reply

    hi tom i am mredul from bangladesh.i really like you..and i am very shocked after knowing about oliver..god bless you for your kind work.and i hope you can help oliver properly.i also want to help him.it is really a kind work.go ahead tom bro.and i always see your movie and you.go ahead and i also help you in making awareness among the people.

  25. Nancy Drewster September 21, 2020
    Reply

    This was such a moving blog! Each one of us plays an important role in life! We can reach out to so many through our words and actions! Thank you for spreading the awareness of this illness. If I can help in any will I shall! My prayers are with the family as the struggle through this! May God bless you and their families! 🙂

  26. Hamid September 21, 2020
    Reply

    This brought tears to my eyes… such a moving post. I’m glad that I am aware of DEBRA and their efforts! You have my full support

  27. SITI ZULAIKHA September 21, 2020
    Reply

    I’m bawling my eyes out, such a moving story to be told. I’m rooting for you!

  28. Sebastian Saavedra September 21, 2020
    Reply

    It’s amazing to know that there are organizations like DEBRA, which are unveiled as The Brothers Trust for people with this disease, which unfortunately exists, I hope Oliver’s family, is very well. Thank you very much for this, it was the best 10 minutes of my day, because it made me reflect and think about the people who have to fight day by day against this type of illness.
    Clearly I will support this movement as much as possible, so that everyone knows the wonderful causes of Debra and The Brothers Trust, and knows the painful, but brave testimonies of families like Oliver’s

    By: Sebastian

  29. Óscar September 22, 2020
    Reply

    Creo que este blog es uno de los que más recordaré (dudo que veas este comentario, pero como puedes comprobar Sr Dom, sus blogs también llegan a España), me encanta como transmites todos esos sentimientos a través de la lectura y admito, que es una idea genial la de dar a conocer esta enfermedad tan poco conocida, debo decir que si no llega a ser por The Brothers Trust, no la habría conocido, así que voy a intentar que por lo menos aquellas personas que conozco sepan sobre esta enfermedad y así este conocimiento se expanda más y más.
    Como siempre espero enormemente el próximo blog.
    Un saludo

  30. Victoria September 22, 2020
    Reply

    This blog was so touching. I never understood really what EB is. Thank you so much for sharing this.

    I hope Oliver is doing well.

  31. Cami Y September 22, 2020
    Reply

    Hello Mr. H,
    This article has opened my eyes in many different ways. Thank you for bringing awareness to this condition and Oliver’s story, it has brought tears to my eyes, please give his family blessings. I am a communications student and I have this feeling I should write an article about this story to bring more awareness on this story and condition to my University. I’m not sure if you will get to reading this, but please reach out with the consent of the Oliver’s family for writing this story for more people to read. Thank you and thank you for everything you and your family do

  32. Georgia Reilly October 23, 2020
    Reply

    This was so beautifully written. The ease in which every line flowed, made the seriousness of the subject that much more impactful on me. Your words perfectly balance the feeling of life as a whole, and how even with pain there will still be humor and love just as tangible to hold on to. It is okay to look at pain just with just as much focus that we put on love and humor. While even though we all want less pain, it is just as important to understand as the things we want more of.

Leave your comment