16 March 2009
In late November 2003 our 4 sons (Joshua now aged 17, Nathan - 15, Daniel - 13 and Luke - 9) 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 would 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 anemia about 4 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
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 four years on Joshua is still suffering the impact of Graft Vs. Host Disease and the impact that prolonged courses of steroids have had. At the moment he is fighting scleroderma (‘hard skin’) and we have seen some positive improvements in his mobility this year. He is now at college studying IT and remains Mr. determined. He is a remarkable young man who has missed so much but is so enthusiastic about life.
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 in 2005 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 happened! Somewhere out there is the most wonderful person who made the donation – unfortunately the donor register that they came through does not allow any contact – but who ever you are – thank you!
In July 2004 a similar 9 out of 10 wonderful mystery donor match was found for Nathan. 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. One impact of the transplant is that his growth is somewhat stunted, but he is now growing well and catching up
Luke went up to London for his initial transplant in May 2007. Nathan was his main donor with some bone marrow also coming from Nathan’s donor but unfortunatley this transplant failed - it was too perfect a match we were told. Luke went for a second transplant in mid November 2007 and came home in January 2008. Since then he too has been fighting against the dreaded Graft Vs. Host Disease and has had too long stays in hospital. In early March 2009 he again returned to school. He is a real fighter and doesnt let anything get him down.
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 fourteen thousand people, young and old, waiting for a life saving or changing transplant around the globe.
In 2005 we established the The XLP Research Trust to fund additional reserach into the condition and to support other families from across the world. Please support this work in any way you can.
Walk with us through the Valley (Psalm 23)