The battle for the Hartleys

THEY faced odds of millions to one to save their sons.

When David and Allison Hartley's four sons were diagnosed at the end of last year with the same life-threatening genetic condition, doctors warned that the only cure for them was a bone marrow transplant.

They told the couple the chances of finding a donor match for a single patient was an incredible 1,000,000 to one let alone for four children in the same family.

And so began a campaign to find donors that put the family from Romsey into the national spotlight.

About 18,000 people had come forward to offer support over the preceding weeks to swell the national bone marrow register to just under 400,000.

Now, as reported in later editions of yesterday's Daily Echo, matches have been found for Josh, 12, Nathan, 10, Daniel, 8, and Luke, 4.

Mrs Hartley was matched as a donor for Josh, who is currently in hospital after the life-saving bone marrow transplant, and a potential donor was found for Daniel but matches were still required for Nathan and Luke.

The family has now revealed that a match was confirmed for both Nathan and Luke on Friday.

Mr Hartley was first to hear the news while at Josh's bedside at London's Great Ormond Street Hospital, where his eldest son is recovering in an isolation unit.

"It was just an amazing feeling when I was told, it's hard to describe," said Mr Hartley.

"I was with Josh at the time and I just had so many emotions running through me, like joy, relief and sheer gratitude to all the wonderful people who have come forward to offer their help and see if they could be matches.

"I phoned my wife immediately to tell her. I have barely seen her for the past eight weeks or so, since Josh went in, because we are both running back and forth to the hospital."

It was in November last year that the couple were told the devastating news that their children all had X-linked lymphoproliferative disease (XLP), one of the world's rarest genetic conditions.

It was described to them as like a "time bomb" and they were warned that all four boys needed bone marrow transplants if they were to live past their teens.

Only 100 cases of XLP have been diagnosed since it was first discovered five years ago, including the Hartley brothers.

Now, after the matches have been found, the family can begin to look to the future with more confidence.

Doctors have yet to decide whether Nathan, who will be the first recipient, will then donate to his younger brother, or the donor will be contacted again to donate for Luke. No dates, however, have been set for a transplant operation for any of the boys until Josh recovers.

He is currently taking special drugs after the bone marrow transplant designed to save him had actually started attacking his body.

Mr Hartley said: "Josh does seem to be over the worst of it now.

"When Josh comes home then we will do the next one this year and we are seeing the consultant on Wednesday about that.

"Then next year, we hope our next son will go in and then the last one until all of boys have been in.

"We don't want to start the next operation, and then if Josh gets sick, there's still our two other sons to care for."

While matches have been found for all four sons, Mr Hartley, of Winchester Road, has pledged to do all he can to boost the Anthony Nolan Trust register even further.

He helped co-ordinate special registration events, including one in the family's home town that attracted hundreds of people - from firefighters to rugby players - in March.

"When we started this we realised we had a unique story," said Mr Hartley.

"We were aware it gave us the opportunity to do something positive, but it was a decision that we did not take lightly.

"We thought it was something very important not just for us but for other people waiting for bone marrow donations.The boys have actually loved the campaign.

"In a strange way they have been very comfortable with everything and the campaign has not been a problem for them, it has been quite the opposite.

"Although matches have been found for the boys I think the key thing for us now is that we still want to encourage people to come forward to see if they can provide matches for other people.

"There are still lots of people out there who don't have matches and are waiting for bone marrow.

"We really hope as many people as possible join the Anthony Nolan Trust register."

Alex Frazier, spokesman for the Anthony Nolan Trust, said: "Obviously it's great news that all the boys will have a positive future ahead of them, they have been given a chance of life.

"David has tirelessly worked to promote the Anthony Nolan Trust and the need for more donors.

"As a charity we rely on donors and financial help, and David has helped people to come forward to help with both."

For more details, contact the Anthony Nolan Trust on 0901 8822 234 or visit the charity's website at www.anthonynolan.org.uk