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Last Updated: Tuesday, 13 September 2005, 20:32 GMT 21:32 UK
Transplant father hopes for cure
The Hartley boys
Joshua Hartley (back, right) had his life-saving operation last year
The father of four brothers diagnosed with a rare life-threatening disease hopes a new website he is launching will eventually help lead to a cure.

Nathan Hartley and his brothers Daniel, Joshua and Luke, from Romsey, Hants, suffer from the genetic disorder X-Linked Lymphoproliferative Syndrome.

Two of the boys have undergone bone marrow transplants to save their lives.

Their father, David Hartley said he hopes the website will educate people, support sufferers and promote research.

Mr Hartley said: "We have had fantastic support for our boys but it would be great if we could be a catalyst to getting a cure.

It would be great if we could be a catalyst to getting a cure
David Hartley

"The three main functions of our website will be fundraising to commission medical research, as well as providing a support network for families who are also having to battle with the condition.

"We also want to educate people about the rare condition and try to stop people from feeling isolated."

The syndrome is one of the world's rarest disorders, affecting about 100 families worldwide.

He added: "We need support from everyone including clubs, societies, organisation and churches."

'Very lucky'

Nathan is scheduled to undergo a transplant on 29 September at Great Ormond Street.

Joshua, 13, and Daniel, nine, both had transplants in 2004, while five-year-old Luke is scheduled to undergo surgery next year.

The brothers were diagnosed with the disease, also known as Duncan's Syndrome, in November 2003. It attacks the immune system.

Their parents, David and Allison, 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.

Earlier this month, Daniel returned to Romsey Abbey School for the first time since his transplant.

"We know we have been very lucky to date," said Mr Hartley.

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29 Aug 05 |  Hampshire
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22 May 05 |  Hampshire
Transplant brother marks birthday
22 Jan 05 |  Hampshire
Transplant brother back to school
19 Jan 05 |  Hampshire
Transplant brother returns home
17 Jan 05 |  Hampshire
Donor success for second brother
30 Nov 04 |  Hampshire
Family renews appeal for donors
22 Nov 04 |  Health
Second brother set for transplant
22 Sep 04 |  Hampshire
Bone marrow boy back with family
23 Aug 04 |  Hampshire
Brothers find life-saving donors
12 Jul 04 |  Hampshire/Dorset
Mother donates bone marrow to son
09 Jun 04 |  Hampshire/Dorset

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