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The Hartley boys

29 July 2006

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 happened!

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 EBV free.

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.

Family web site www.teamhartley.co.uk