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Four brothers with rare genetic disease find life-saving donors

James Burleigh
Tuesday 13 July 2004 00:00 BST
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Four brothers with the same rare genetic condition could have their lives saved after viable bone marrow donors were found for each child, their parents said yesterday.

Four brothers with the same rare genetic condition could have their lives saved after viable bone marrow donors were found for each child, their parents said yesterday.

David and Allison Hartley's sons were all diagnosed with X-linked lymphoproliferative syndrome, or Duncan's syndrome, in November last year. Doctors said the only cure for the boys - Joshua, 12, Nathan, 10, Daniel, eight, and Luke, four, is a bone marrow transplant.

Four days ago, a confirmed match was found for Nathan and Luke after Mrs Hartley was matched as a donor for Joshua and another donor was found for Daniel two months ago. Mr Hartley, from Romsey, Hampshire, said: "We now have a confirmed match for my last two boys. That's extremely good news. It takes a lot of pressure off us. We now have a full set, if you like, so we're obviously very pleased about that.

"It's what we were waiting for - that phone to ring with confirmation that there's some stranger out there who's been found to be a match for one of our sons to save his life. It's even better - this person is a potential match for both our sons."

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. "Luke doesn't really have an understanding of it, but Nathan has been beaming for the last two days," said Mr Hartley.

The eldest son underwent a bone marrow transplant at Great Ormond Street Hospital in London on 9 June after his mother donated stem cells.

Mr Hartley said: "We are so happy - it's the answer to our prayers that we have got to this stage - but we know there's still thousands of people out there waiting for bone marrow."

The Anthony Nolan Trust is appealing for donors, particularly males aged between 18 and 40. For information on donating call 0901 8822 234 or visit www.anthonynolan.org.uk.

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