Hartley family
XLP Stories

Hartley family

Published Thursday, 17th August 2017

In late November 2003 our 4 sons (then aged Joshua - 11, Nathan - 9, Daniel - 7 and Luke - 3) were diagnosed with a rare genetic conditions known as X-Linked Lymphoproliferative Syndrome (XLP1) or Duncan Disease. We were told that the only life-saving cure would be 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 in 2000) nothing could have prepared us for this devastating news. However we knew that there was light at the end of the Valley - a cure as long as the boys can get a good bone marrow (or stem cell) match and stay well - and this is what we prepared ourselves for.

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 he suffered greatly the impact of Graft Vs. Host Disease and being on a prolonged courses of steroids have and is now registered disabled. Joshua is currently finishing his final year at university with the potential to go on an do a masters later this year.

In late April 2004, we found out that there is a confirmed 9 out of 10 unrelated match for Daniel from the UK. Daniel had his transplant from the wonderful mystery donor in November 2004 and came home in early January 2005. After a few set backs, Daniel returned to school and has made a spectacular recovery. He trained and now works as a chef. Aside from high blood pressure, there have been no adverse affects of his transplant. 

In July 2004 a similar 9 out of 10 wonderful mystery donor match from Europe was found for Nathan and Luke. In October 2005 Nathan went up to London for his transplant. Initially the transplant went very well but he did have a ‘fit’ which was a reaction to one of the key drugs used. It was ‘touch and go’ at one stage but he came home on his birthday in December 2005. After coming home he has one small temperature which meant 3 nights in hospital, and has since made a full recovery and is currently looking for work.

Luke went for his transplant in May 2007 with his elder brother Nathan as his donor. Unfortunately the new stem cells didn't graft and so his old immune system re-emerged and he then went for a second transplant in November 2007, this time the transplant was successful. Luke went through a series of major runs ins with graft vs host disease including a ruptured bowel resulting in a stoma for a year. As a result of this he suffered alopecia. Today he is well although still needs sub-cut weekly immunoglobulins and is working at a local pub.

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 alley 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….

When we went public with our appeal for more bone marrow donors back in 2003 through to 2005, 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.

We established the XLP Research Trust in 2005 to help other families facing the long hard battle that we have gone through and to fund changing medical research. 

Updated - March 2020