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| Parents find 'cure' for sick son | Parents find 'cure' for sick son |
| (30 minutes later) | |
| By Clare Murphy BBC News health reporter Reuben is now eight and thrivingThe parents of a little boy with a rare blood disorder believe they have found a cure for him after his condition left doctors at a loss. | By Clare Murphy BBC News health reporter Reuben is now eight and thrivingThe parents of a little boy with a rare blood disorder believe they have found a cure for him after his condition left doctors at a loss. |
| Eight-year-old Reuben Grainger-Mead never received an exact diagnosis for his illness, but doctors thought it was similar to Diamond-Blackfan anaemia - in which the body fails to produce sufficient red blood cells. | Eight-year-old Reuben Grainger-Mead never received an exact diagnosis for his illness, but doctors thought it was similar to Diamond-Blackfan anaemia - in which the body fails to produce sufficient red blood cells. |
| It has been a long road for his parents, who first noticed that there was something wrong with their son just after his second birthday. | It has been a long road for his parents, who first noticed that there was something wrong with their son just after his second birthday. |
| "He was very pale, ill - always just generally unwell," says his father, Peter Mead. "His development was delayed - we knew something wasn't right. | "He was very pale, ill - always just generally unwell," says his father, Peter Mead. "His development was delayed - we knew something wasn't right. |
| "He was put on a regime of regular blood transfusions - once a month. But it wasn't sustainable and doctors didn't really know what to do next. They were scratching their heads. They'd tried their best and I've no quarrel with them. | "He was put on a regime of regular blood transfusions - once a month. But it wasn't sustainable and doctors didn't really know what to do next. They were scratching their heads. They'd tried their best and I've no quarrel with them. |
| "But we decided we weren't going to go home and cry, or bury our heads in the sand. We started searching." | "But we decided we weren't going to go home and cry, or bury our heads in the sand. We started searching." |
| 'Miraculous' | 'Miraculous' |
| Scouring the internet took the West Yorkshire family down a number of unsuccessful avenues but eventually brought them to the door of Diana Wright, a nutritionist. | Scouring the internet took the West Yorkshire family down a number of unsuccessful avenues but eventually brought them to the door of Diana Wright, a nutritionist. |
| We need to find out what the longer term effects might be of introducing extra amino acids into the diet Dr Josu de la FuenteHaematologist | |
| After a variety of tests she put him on a course of dietary supplements which included some essential amino acids. | After a variety of tests she put him on a course of dietary supplements which included some essential amino acids. |
| "We didn't notice the difference overnight - it was a slow process. But there was definite improvement after a year. His red blood cell count started to climb - and he was able to go longer and longer between blood transfusions. It was six weeks, then eight weeks, then even more," says Mr Mead. | |
| "Doctors were amazed at the progress he was making. Now he's eight, and he's almost completely caught up with his friends. | "Doctors were amazed at the progress he was making. Now he's eight, and he's almost completely caught up with his friends. |
| Academically he's fine - the top half of his class. There are a few problems with his motor skills, but what we've seen is nothing short of miraculous." | Academically he's fine - the top half of his class. There are a few problems with his motor skills, but what we've seen is nothing short of miraculous." |
| Amino action | Amino action |
| Reuben and Friends, a charity set up by family friends, has now raised £70,000 to fund further research into the treatment, which could help some of the 150 children in the UK with Diamond-Blackfan anaemia. | Reuben and Friends, a charity set up by family friends, has now raised £70,000 to fund further research into the treatment, which could help some of the 150 children in the UK with Diamond-Blackfan anaemia. |
| Doctors believe that one of the key components in Reuben's supplements is the amino acid leucine. | Doctors believe that one of the key components in Reuben's supplements is the amino acid leucine. |
| A recent study in the Czech Republic found that leucine significantly improved the condition of a little girl with Diamond-Blackfan anaemia, and similar results were beginning to emerge in three other children receiving the same treatment. | A recent study in the Czech Republic found that leucine significantly improved the condition of a little girl with Diamond-Blackfan anaemia, and similar results were beginning to emerge in three other children receiving the same treatment. |
| Dr Josu de la Fuente, a haematologist at Imperial College, is to spearhead the research in the UK. He hopes to have some initial results by the end of next year. | Dr Josu de la Fuente, a haematologist at Imperial College, is to spearhead the research in the UK. He hopes to have some initial results by the end of next year. |
| "A significant number of children do not respond to the traditional treatments, so this could be very exciting," he says. But he warned that around one in 10 patients go into remission on their own, and that this could, in principle, have happened to Reuben. | |
| "The other issue is that we need to find out what the longer term effects might be of introducing extra amino acids into the diet - and at this stage we just don't know." | "The other issue is that we need to find out what the longer term effects might be of introducing extra amino acids into the diet - and at this stage we just don't know." |
| Children with this anaemia also run a significantly higher risk of leukaemia and bone tumours and it is unclear whether a treatment with supplements - even if improves the original condition - reduces this risk. | Children with this anaemia also run a significantly higher risk of leukaemia and bone tumours and it is unclear whether a treatment with supplements - even if improves the original condition - reduces this risk. |
| Professor Inderjeet Dokal of the Centre for Paediatrics at Barts and the London School of Medicine said evidence was increasingly pointing to leucine as a potential treatment. | Professor Inderjeet Dokal of the Centre for Paediatrics at Barts and the London School of Medicine said evidence was increasingly pointing to leucine as a potential treatment. |
| "But I would warn anyone against starting their child on this sort of regime - we don't know what the long term consequences might be. Just because something is natural, it doesn't mean it's the right thing to do." | "But I would warn anyone against starting their child on this sort of regime - we don't know what the long term consequences might be. Just because something is natural, it doesn't mean it's the right thing to do." |