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Last Updated: Sunday, 22 May, 2005, 13:02 GMT 14:02 UK
Transplant brother's charity walk
The Hartley boys
Joshua Hartley (back, right) had his life-saving operation last year
The eldest of four brothers diagnosed with a rare fatal illness has taken part in a sponsored walk to help people in need of bone marrow transplants.

Joshua Hartley and his brothers Daniel, Nathan and Luke, from Romsey, Hants, suffer from the genetic disorder XLP.

In June 2004 Joshua, 13, had a life-saving bone marrow transplant.

On Sunday he was taking part in a four-mile long walk at the Broadlands estate in Romsey in aid of a charity that helps find bone marrow donors.

The brothers were diagnosed with XLT (X-Linked Lymphoproliferative Syndrome), or Duncan's Syndrome, which attacks the immune system, in November 2003.

Their parents, David and Allison Hartley, were told their sons were unlikely to reach their teenage years without a bone marrow transplant.

Joshua had his operation after his mother Allison was found to be a match.

It is fantastic that Josh is doing the walk and that he wants to do it
David Hartley

Sunday's walk was organised by Joshua's family as a thank you to the Anthony Nolan Trust which helped to find donors for Joshua's brothers after a massive campaign last year.

The teenager was aiming to raise 2,000 for the trust and has so far met this, collecting a total of 2,074 in pledges.

His father explained that the success of last year's campaign had created a financial burden for the Anthony Nolan Trust because it cost the charity 70 to register each potential donor.

He said: "The Anthony Nolan Trust has helped us so much over the past year and we just wanted to do whatever we could to help them in return.

"Josh is very pleased at meeting his target. We have about 700 people due to come along to the walk so hopefully the Anthony Nolan Trust will get a good chunk of money out of it."

He added: "It is fantastic that Josh is doing the walk and that he wants to do it. It will be a real challenge for him because, with the steroids he is on, it won't be easy."

After the walk, the family will be preparing for Nathan, 11, to go to Great Ormond Street Hospital in London to undergo his operation.

Daniel, nine, had his transplant in November, while Luke, five, is due to undergo his surgery later this year.

XLP, or Duncan's Syndrome, is one of the world's rarest fatal disorders affecting about 100 families world-wide.

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