XP Support Group - UV protection not isolation.
Working in Partnership with Teddington Trust.
Book of Remembrance
Our book of Remembrance was opened in June 2003 with the following words:
In 1999 the XP Support group was established in the UK to assist patients and their families with XP and other light sensitivities. Until then many families lived in the dark and were forgotten by our society. This book of remembrance will ensure that our “Children of the Moon” will never be forgotten.
The Book of Remembrance is kept at the UK Offices and is available for anyone to see. It is also shown at the Owl Patrol night time camp.
It is with great sadness that we announce the passing of Merve Uluyardimci in February 2008. Many of you have met Merve at Camp Sundown and at the German night time camp. She had a great spirit and we shall miss her very much.
Aban Mustafa Waqar (Ali)
It is with great sadness that we announce the passing of Aban Mustafa Waqar (Ali) aged 12 in March 2008. We had the pleasure of meeting Ali and his family at an XP clinic in 2006. The family travelled from Pakistan to attend the clinic and had the opportunity to meet other XP Families.
It is with great sadness that we report the passing of Dr David Busch on 11th April, a great friend of those with XP.
We quote below the memorial given on the XP Society website at www.xps.org
“We in the XP Society join with countless patients, friends, family, and associates in mourning the loss Thursday of a man who was our good friend and strong supporter from the very beginning of our organization some seven years ago.
Doctor Busch was often the first to confirm a diagnosis to patients with the DNA repair disorders Xeroderma Pigmentosum (XP) or Cockayne’s syndrome (CS). His laboratory was the only source for such clinical diagnostic testing in the United States.
But this only begins to tell the important role he played in our lives. His wit, his friendship, his love of animals (cats in particular), his sensitivity in dealing with families and with young children and so many other positive qualities come to mind.
David Busch joined in the fun and games at Camp Sundown. The children so loved to play with him. When he brought his much loved cats to camp, he was the instant centre of attention.
Dr. Busch took his interest in animals very seriously. He was sole proprietor of Jadzia Cattery, and President of Emony’s Exotic Cats. Not long ago he completed a one day course and passed an examination on “Basic Husbandry of Exotic Felines” conducted by The LIOC Endangered Species Conservation Federation, Inc. He concentrated on Norwegian forest cats and, more recently, lynxes.
There were many facets to this man, and as we receive anecdotes from the families he touched, we will add them to our memorial on this Website.
Here he is shown opposite conferring with parents at a Camp Sundown session.
We know that he fought a valiant fight against the myelodysplastic syndrome with which he was diagnosed in late 2000. We know all this because, characteristic if this scientist, he kept us informed through regular e-mail reports and his Web page devoted to this topic.
We miss you so much already David Busch.
It is with great sadness we announce the passing of Dilsha, aged 9, on December 22nd 2002.
We ere privileged to meet her in Germany in 1999. Our condolences to Mehmet and his family
It is with great sadness we announce the passing of Gaelon on Saturday 22 March. Gaelon and his mother Stephanie were the subject of our Family profile in our July 2000 Newsletter.
We have sent our condolences to Stephanie, and Gaelon will be added to our Book of Remembrance.
Galeon and Stephanie’s story can still be read here in the Family profile section.
Sister Pat Winter
It is with great sadness that we announce the passing of Sister Pat Winter in December 2003.
Sister Pat was one of our helpers behind the scenes. With Alison Fraser she wrote our Child Protection Policy.
Even in her passing she did not forget us and asked that donations be sent to us rather than flowers. This raised £269. Pat’s name will be added to our Book of Remembrance.
In Issue 3 (September 1999), we published the story of Steven, by his friend Ian. It is with great sadness that we announce the passing of Steven, aged 18, on Friday 15 September. Steven’s story was an inspiration to many people and he will be greatly missed. Our thoughts are particularly with his grandparents who brought him up. Below are a few words that we received from his friend Ian:
“It is with great sadness that I have to inform you that my friend Steven Williams passed away this morning. He died peacefully at Bangor Hospital with his family around him. He was in no pain. XP has sadly claimed another special person. His tumour had grown so big and so quick, he could take no more. It is my personal hope that his medical history will not just be filed and forgotten, for I believe his history could greatly benefit the research into XP. I will work on this, as and when, the time is right and his family have come to terms with their loss. Please always continue the work you do for people with XP