A FAMILY in which four brothers have an extremely rare genetic disorder has been offered new hope after one had a lifesaving bone-marrow transplant.
Joshua Hartley, 12, Nathan, 10, Daniel, 8, and Luke, 4, had X-linked lymphoproliferative disease (XLP), or Duncan’s syndrome diagnosed in November 2003. It has been diagnosed in just 100 people in the world.
Yesterday Joshua began his convalescence at home after receiving bone marrow from his mother, Allison, 37, at Great Ormond Street Hospital in London. Joshua’s father, David, said that the boy’s return home was a moment of great hope for the family, who live in Romsey, Hampshire.
Doctors have said that without bone-marrow transplants to combat the disease, which attacks the immune system, it is unlikely that the Hartley boys would make it into their teens. The disorder deprives the body of the ability to fight the Epstein-Barr virus, which causes glandular fever, and the sufferer is left vulnerable to diseases such as lymphatic cancer.
Now matches have been found for Joshua’s brothers after more than 16,000 people responded to an appeal for donors through the Anthony Nolan Trust. Daniel will be having a transplant shortly.
Advertisement
Mr Hartley, 41, said: “It’s a huge day for the family to have Josh back home. To get the first one home well and on his way to recovery is what we have been dreaming of.
“It is great for the other boys to see him coming home. It is a great inspiration for them and it gives us great hope for the future.”
Joshua added: “It’s great to be home with my family and to be able to see my friends again.”
But his return home has not been straightforward. After the transplant in early June, Joshua suffered a reaction to the chemotherapy had an infection, and so could not leave hospital as planned.
Mr Hartley said: “Initially the transplant went well but because he became ill Josh had to stay in hospital, and it has now been three months since he first went in and he was chomping at the bit to be let out.
Advertisement
“But now he’s home we are going to spend time together as a family, getting Josh settled. We won’t be having any parties yet because Josh can’t see too many people for the next few months but he will be having a few friends around.”
Mr Hartley added that as well as helping Joshua to recover, the family will be preparing Daniel for his transplant which is expected to take place in October.
Mr Hartley also urged the public to join the Anthony Nolan Trust’s bone-marrow register to help other families.
Anyone interested in becoming a donor can visit the Anthony Nolan Trust website: www.anthonynolan.org.uk.