In late November 2003 our 4 sons (Joshua - 14, Nathan - 12, Daniel - 10 and
Luke - 6) were diagnosed with a rare genetic conditions known as X-Linked
Lymphoproliferative Syndrome ( XLP ) or Duncan Disease. This is very rare with
only around a 100 families world wide being diagnosed. Without treatment it is
unlikely that the boys will make it into and through their teen years. The only
current 'cure treatment’ is a Bone Marrow Transplant.
The news was 'numbing'. Whilst the two eldest boys had had significant
medical problems previously (Nathan had a b-cell lymphoma at the age of 3 and
Joshua had severe anaemia about 3 years ago) nothing could have prepared us for
this devastating news. However there is a light at the end of the Valley - there
is a cure as long as the boys can get a good bone marrow match and stay well -
and this is what we are now striving towards.
Joshua's transplant happened on 9th June 2004 and he finally
returned home on the 20th August. Allison (his Mum) was the 9 out of
10 donor for him and the transplant itself went very smoothly. There were some
complications after transplant and two years on Joshua is still suffering the
impact of Graft Vs. Host Disease and the impact that prolonged courses of
steroids have. He has been back at school a fair bit and remains Mr determined.
In late April 2004, we found out that there is a confirmed 9 out of 10
unrelated match for Daniel. Daniel had his transplant from the wonderful mystery
donor in November 2004 and came home in early January. After a few set backs,
Daniel returned to school last year and has made a spectacular recovery – he
is now growing and keeping very well and a few people have asked when he will
have his transplant – their jaw drops when we tell them that it has already
In July 2004 a similar 9 out of 10 wonderful mystery donor match was found
for Nathan and Luke. This one mystery donor will potentially donate for both
boys as they are tissue type matches. In October 2005 Nathan went up to London
for his transplant. Initially the transplant went very well but he did have a
‘fit’ which as a reaction to one of the drugs. It was ‘touch and go’ at
one stage but he came home on his birthday in December. After coming home he has
one small temperature which meant 3 nights in hospital, and he returned to
school after Easter 2006 and is doing great.
Luke will go for transplant at some point early in 2007. He remains well and
As committed Christians we have a clear understanding and deep experience
that God walks through this with us through the good and bad times. Indeed if it
wasn't for the presence of God in our lives and prayer support we have received
from Christians around the world we have no idea where we would be….. We
certainly don't understand why we are going through this - and would do
literally anything to get out of this dark place. We have found Psalm 23 to be a
great comfort - knowing that today we walk through the Valley of the shadow of
death, but knowing that God supports us and guides us through. And that it is
only a valley - and at the end of it there is a plain that we will be able to
look back on and understand more….
Since going public with our appeal for more bone marrow donors, the UK 's
Anthony Nolan Trust has had an amazing 16,000+ responses from people wanting to
join the register. But today there is still the need for more donors for the
seven thousand people, young and old, waiting for a life saving or changing
transplant around the globe.