CHARITIES WE HELP - Debra #FightEB
Registered UK charity No. 1084958
DEBRA is the national charity providing support to people affected by Epidermolysis Bullosa (EB), a painful genetic skin blistering condition. As well providing care and support to improve quality of life for individuals and families living with EB, DEBRA also funds pioneering research into future treatments that will ensure no one has to suffer with EB.
We are very grateful for the continued support we receive from the Brothers Trust. The grants awarded by the trust, along with other donations received, help us to continue to provide the vital healthcare and community support services that families suffering with EB so desperately need. Thank you.
How we’ve supported Debra
November 12, 2018 - A helping hand to Debra
Debra is the charity founded to help people with the disease called Epidermolysis Bullosa - but better known as EB. It is the disease James Dunn suffered with and died from in April this year. Nurses at the world renown Great Ormond Street Hospital in London are on record as saying that EB is the worst condition a person can be born with. Put simply, EB, in its various forms is when someone’s skin does not function as it should. It tears and rips at the slightest touch and as skin is the largest organ and extends throughout our bodies inside and out, it does not take much to imagine how debilitating it is and the pain that patients continually endure. There is no cure only salving the pain of this life limiting and in some cases, fatal condition.
The Brothers Trust is therefore proud to be able to continue to support Debra here in the UK with a further grant of £40,000 to completely fund a Community Support Manager, responsible for 400 individuals and their families affected by EB in the south of England. To provide them with financial help, emotional needs, housing complexities, accessing help and education support and planning. Living ourselves in this region, we will come to know this manager and will be able to feed back and demonstrate tangible examples of how your funds are reaching people with EB.
Having a baby with EB must come as a terrible shock to parents. It is a condition that will affect their child and their own lives forever. Typically, a parent and usually the mum will need to become the full-time carer of the child and with this comes emotional strains as well as financial pressures.
Helping such patients and their families is a blessing, made possible by the generosity of our supporters. On behalf of the people who will benefit from this grant, thank you very much.
April 10, 2018 - Our tribute to James Dunn
James Dunn 13/07/1993 – 6/04/2018
A life that is lived to its maximum potential is a joy and a success; it is all anyone of us can hope for. Anything less is a shame and even a waste and in this noble quest, James Dunn showed us all the way to go.
I met James through the establishment of The Brothers Trust. Such was his influence on us all, meeting James alone is reason enough for establishing the trust and given the impact that he had on us all, it is remarkable that we knew him for less than less than a year.
We met James for the first time in July 2017, at the launch of our charity; a screening of Spider-Man, Homecoming at a private cinema for raffle winners and auction bidders to see the film and a chance to meet Tom. I was already aware of EB and its charity, Debra. I knew what a pernicious disease that EB is; memorably described by a nurse at Great Ormond Street Hospital as the worst disease that can blight anyone’s life. I was also attracted to its cause because of the lack of awareness of the disease which made it feel like a good fit for our trust.
I viewed a video on-line of James having his wounds dressed by his mum. A heart rending watch, it moved me to tears and we invited James to our first event.
I was anxious on the day. There was much to think about. Winners had travelled from all four corners of the world but no attendees were dealing with the obstacles that James needed to scale. Wheelchair bound, I worried about his access to the cinema and the toilet not to mention our house later in the day for a photo-shoot. I fretted about everything until the family rolled up and I saw James’s beaming smile. James was not worried. He looked so excited, like a kid without a care in the world. Only James was not a kid of course. He was twenty-four when he died, his EB stunting and preventing his growth.
Regulars readers of this blog will know what blossomed between James and Tom from this original meeting. They met several times and in a short but exciting journey that took in TV appearances, dinner at the Langham with the country’s foremost chefs, a portrait campaign using James’ photograph and much else besides.
When people die, very often, clichés are used to depict their bravery and the impact that they had. I make no apologies for making these claims here now for James. He did light up a room. He was a force of energy and he was as brave as a lion.
So much to admire about James but what stood out above all else was his fortitude. We are all dealt different hands in life; with some people so seemingly blessed and others so blighted. James had a tough lot and so he had every reason to be disconsolate and complaining. In the times that I was lucky enough to meet him, he never once showed any anger or complaint and nor did he hanker for any pity. He just got on with his life. He had a verve for life which meant that his life was full, which is what we all strive for.
During our brief time, what we all hope to do is to leave our mark. To be survived by our children and hope that they prosper is such a mark. Other people manage more indelible legacies: Shakespeare, Stan Lee, Steve Jobs, JK Rowling…
James Dunn, too, has left his mark and in so many ways. The funds that he raised for Debra is an obvious place to start. Nikki’s idea to use James’ photograph of Tom now seems particularly inspired because it is a tangible reminder of James and it is fitting that his photo means so much to people and that they hang on walls across the world. We know this because we dispatched them ourselves to China, Australia, Brazil, America… The people who own these images and all the people who participated and contributed to this campaign, your kindness lives on in James’s legacy, so thank you.
But James’ greatest mark is his example of how he lived. Most poignantly for his fellow EB sufferers to note that the disease didn’t limit James in his life and what he was able to achieve. Travelling can be difficult at the best of times: inconvenient and even painful for the able bodied; imagine then the problems it posed for James and yet he travelled and took in the world.
And in a wider context, James is an example to us all. All of us tend to live our lives in bubbles. Of viewing life through our restrictions rather than our blessings and too quickly blaming others feeling sorry for ourselves. James didn’t do this at all and why meeting him was always so humbling. His EB caused him ongoing and constant pain such that daily morphine was part of his daily life. His injuries were on show for all to see and his pain was palpable. Even after his arm was removed and his cancer had returned and the treatment was only containment, James was busy making plans. Posting his videos and continuing his fight and always with that broad smile of his.
Any account of James’s life is incomplete without mention of his remarkable parents, Kenny and Lesley. The success of James’s life is a testament to their love and commitment to their son. They are a stoic couple, both so dignified and admirable. It is no mystery to me why James could thrive. Less loving and strong people could not have coped with a child like James and why Debra (www.debra.org) deserves our support and better awareness of the work that they do.
Meeting and getting to know James has been a privilege for us all. Of all the illustrious people that Tom encounters in his blessed life, in the short time that he has known James, I venture that his impact on Tom will be indelible and as marked as any.
James coined a moto for his himself in how to live his life - #LiveLaughLove
A simple philosophy but one that is perhaps easier said than done. James managed it with aplomb and why he is an example to us all.
Your pain is finally over James. Rest in peace and thank you.
