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Transplant first for gut failure Transplant first for gut failure
(1 day later)
Brothers born with a rare disease that destroys the gut have had their lives transformed by a pioneering operation.Brothers born with a rare disease that destroys the gut have had their lives transformed by a pioneering operation.
Michael Wenman, 12, became the world's first child to have a bone marrow transplant for gut failure, followed later by his younger brother Matthew.Michael Wenman, 12, became the world's first child to have a bone marrow transplant for gut failure, followed later by his younger brother Matthew.
Before the operation the boys spent much of their time in hospital but they can now lead normal lives.Before the operation the boys spent much of their time in hospital but they can now lead normal lives.
Great Ormond Street Hospital says more transplants will take place next year following a successful pilot study.Great Ormond Street Hospital says more transplants will take place next year following a successful pilot study.
Gut failure affects the body's digestive system, leaving it unable to absorb vital nutrients.Gut failure affects the body's digestive system, leaving it unable to absorb vital nutrients.
Children with the most severe form of the condition have to be fed intravenously to keep them alive.Children with the most severe form of the condition have to be fed intravenously to keep them alive.
It's a new way of treating something that was untreatable before Dr Neil ShahIt's a new way of treating something that was untreatable before Dr Neil Shah
Before his transplant at the age of six, Michael, lived in constant pain, and had rashes all over his body.Before his transplant at the age of six, Michael, lived in constant pain, and had rashes all over his body.
His mother Lisa says he has had a 100% improvement in his quality of life since the surgery, and is now "a different child".His mother Lisa says he has had a 100% improvement in his quality of life since the surgery, and is now "a different child".
"He can now play football, he can go swimming, he goes to full-time school," she told the BBC."He can now play football, he can go swimming, he goes to full-time school," she told the BBC.
"He used to sleep in the afternoon; now he'd stay up all night if I let him.""He used to sleep in the afternoon; now he'd stay up all night if I let him."
New approachNew approach
Lisa Wenman, from Cranleigh in Surrey, said she first realised there was something wrong with Michael when he was three weeks old. After numerous tests, he was eventually diagnosed with gut failure, at the age of one.Lisa Wenman, from Cranleigh in Surrey, said she first realised there was something wrong with Michael when he was three weeks old. After numerous tests, he was eventually diagnosed with gut failure, at the age of one.
Gut failure A rare condition that affects about 100 children in the UKPainful and debilitating, it leads to a very low quality of lifeChildren cannot eat normally and have to be fed through a tubeThe cause is unknown and few treatments are availableGut failure A rare condition that affects about 100 children in the UKPainful and debilitating, it leads to a very low quality of lifeChildren cannot eat normally and have to be fed through a tubeThe cause is unknown and few treatments are available
He was continuously unwell, and at one point was so ill he was given just 15 minutes to live.He was continuously unwell, and at one point was so ill he was given just 15 minutes to live.
Doctors at Great Ormond Street eventually suggested a bone marrow transplant operation, even though it had never been tried before for gut failure.Doctors at Great Ormond Street eventually suggested a bone marrow transplant operation, even though it had never been tried before for gut failure.
They hoped that by replacing Michael's defective immune system, they might be able to stop the inflammation that was destroying his gut.They hoped that by replacing Michael's defective immune system, they might be able to stop the inflammation that was destroying his gut.
Dr Neil Shah, consultant paediatric gastroenterologist at Great Ormond Street Hospital, said the decision was "incredibly difficult", but all other treatment options had failed.Dr Neil Shah, consultant paediatric gastroenterologist at Great Ormond Street Hospital, said the decision was "incredibly difficult", but all other treatment options had failed.
"It's a new way of treating something that was untreatable before," he said."It's a new way of treating something that was untreatable before," he said.
Great Ormond Street has now carried out 11 such operations, with success in 10 cases.Great Ormond Street has now carried out 11 such operations, with success in 10 cases.
'Normal lives''Normal lives'
Among them was Michael's brother Matthew, who also has the condition.Among them was Michael's brother Matthew, who also has the condition.
"When I had Matthew, he seemed absolutely perfect," said Lisa Wenman."When I had Matthew, he seemed absolutely perfect," said Lisa Wenman.
"We came home and on the fifth day I started to get a bit concerned - he didn't seem to want his feed.""We came home and on the fifth day I started to get a bit concerned - he didn't seem to want his feed."
Great Ormond Street is to expand the serviceGreat Ormond Street is to expand the service
Matthew, now nine, was eventually diagnosed with gut failure, and had a bone marrow transplant when he was four.Matthew, now nine, was eventually diagnosed with gut failure, and had a bone marrow transplant when he was four.
"The improvement for Matthew has been just as dramatic as it was for Michael," the boys' mother explained."The improvement for Matthew has been just as dramatic as it was for Michael," the boys' mother explained.
"I have another son who is 14 and I really feel as though I have three strong healthy boys in my family now.""I have another son who is 14 and I really feel as though I have three strong healthy boys in my family now."
The boys have gone from being in and out of hospital almost every week, to visiting doctors for a follow-up only once a year.The boys have gone from being in and out of hospital almost every week, to visiting doctors for a follow-up only once a year.
"Michael and Matthew are now leading completely normal lives," said Dr Shah."Michael and Matthew are now leading completely normal lives," said Dr Shah.
"They're doing what kids should do.""They're doing what kids should do."
Following the pilot study, Great Ormond Street Hospital has secured funding from the NHS to become a recognised centre for carrying out bone marrow transplants for gut failure, starting next April.Following the pilot study, Great Ormond Street Hospital has secured funding from the NHS to become a recognised centre for carrying out bone marrow transplants for gut failure, starting next April.
Newcastle General Hospital will run a similar service, and together the hospitals hope to treat about 10 patients a year.Newcastle General Hospital will run a similar service, and together the hospitals hope to treat about 10 patients a year.
Dr Paul Travers, senior scientist at the MRC centre for regenerative medicine at Edinburgh University, said the work was a "useful advance" that might hold promise for treating other immune conditions.
"The use of stem cell transplants to reset the immune system is one that offers a lot of promise in a number of conditions," he said. "To see it applied in this case is very exciting."