I would like to start this blog by saying that this is as difficult to write as it is to read, and we have the consent of the Xeroderma Pigmentosum Society in South Africa and their parents to release these photographs. I appreciate that this is hard to look at, and I deeply respect the parents and children for sharing these in the hope of shining a light on theirs, and others like them daily struggle.
When we learnt 3 years ago of the first Camp Bushbaby in South Africa and the work of Maryna De Beer who runs the society and provides a valuable hub and annual gathering to extremely vulnerable XP sufferers, we felt immediately that we wanted to support them. Last year we at Teddington Trust were able to provide a UV protective outfit for every child attending and so we were determined that these children should also be the first to received the Little Ted educational bears and books.
And while we have been waiting with much anticipation to see how the children enjoyed their gifts this has been very bitter sweet as Maryna released pictures of camp.
A particular one of 14 year old Nquobi, who is extremely poorly, receiving his bear stood out starkly, and even as complete a pacifist, I find myself as mad as hell!!
This dear boy is most severely affected by aggressive skin cancers including tumours into his brain. In the last 11 months this little boy’s condition has worsened and the tumours have grown substantially while awaiting for rescheduled appointments, cancelled operations and through the general lethargy of the system under which he lives. With appropriate early intervention this could all be avoided, and such suffering prevented.
Shockingly this is not an isolated instance, many children at the Camp are gravely ill and suffering for want of action and access to much needed medical attention, which sadly is a story not solely resonating from South Africa but also in other regions across the world.
In 2015 that any child should die from skin cancer is nothing short of a crime. To put this into absolute perspective, these children have the very same condition as Eddison and others like him in the UK. What separates him and them, is this, and this alone – Access to an exceptional NHS National XP Service achieving early and prompt diagnosis and outreach support and valuable education, Access to Photo-protective Films and Fabrics and Access to rapid response removal of cancers. (If a patient visiting the UK National XP Clinic has cancer suspected, it is removed that afternoon, it is not left for months and years in this inhumane way).
With such relatively small numbers of XP patients globally, it is abundantly clear to me that this should be treated as a global matter, and that every Trust, Society, Support Group and Organisation across the world supporting XP in their own way, needs to come together and centralise data, share information and work in the true spirit of Collaboration to make sure that Education and Awareness are at the forefront and the priorities for all can be achieved regardless of country.
But, we can all play a part in this, I am no politician, activist or the kind, but I urge you all to share this at every level in every region and if you know your local MP make him/her aware. Don`t let`s just look, shed a tear, then forget!
It seems to me that at very varying levels across the world sufferers of Xeroderma Pigmentosum consistently fall through the net and fail to achieve the basic recognition, support, life saving protection and treatment necessary from their home lands.
Regardless of Party, Government, Regime, Language, Country or Continent every parent with a child with this rare condition should be assisted to ensure that these most basis needs can be met for this incredible group of people who are simple dying from daylight!
Rare and misunderstood should not equal ignored and forgotten!!
Contact Maryna De Beer for how to help this group in South Africa:
or contact us at firstname.lastname@example.org