Parents find cure for boy, 8, whose 'permanent hangover' baffled doctors
Daily Mail Reporter
Last updated at 12:55 AM on 12th April 2009
http://www.dailymail.co.uk/health/article-1169068/Parents-cure-boy-8-permanent-hangover-baffled-doctors.html His medical condition was so rare that doctors could not even give it a name.
Reuben Grainger-Mead was born with a blood disorder that attacked his immune system, leaving him weak and barely able to talk.
At the age of two his growth was stunted and his heart was beating three or four times quicker than normal.
Baffled by the mystery illness doctors likened it to a 'permanent hangover' but eventually concluded that there was nothing they could do.
But despite the devastating news his parents refused to give up and now thanks to a nutritional consultant the eight year old is at last leading a normal childhood.
He no longer needs a monthly blood transfusion and is able to play out with his friends like any other boy his age.
'The outlook was not good - although no one actually said it we knew his life could be in danger,' said his father Peter Mead, a 45-year-old supply chain boss.
'The stark reality was that Reuben needed a blood transfusion every month to increase his red blood cell count, which would mean constant care throughout his whole life and so much time spent in hospital.
'The last resort would then have been a bone marrow transplant, which doctors said he may not have survived because he was so ill.'
He and his wife, Michelle Grainger-Mead, 39, turned to the internet for alternative therapies, considering acupuncture and Oriental therapy, before turning to nutritional consultant Diana Wright.
She discovered Reuben lacked certain vital amino acids and proteins in his body and so put him on a course of dietary supplements which were mixed into his food and drink.
Now, after years of being too weak to play with friends, Reuben can finally get on with his childhood.
And in the process his new lease of life could provide a breakthrough for cancer sufferers.
The astonishing success of Reuben's treatment has prompted doctors to plan a study to see if similar therapy works on other ill children and adults.
Although born with the disorder doctors only discovered Reuben's condition when he was two.
At first they thought it was similar to Diamond Blackfan Anaemia (DBA) - but some of his symptoms were different to other DBA sufferers, making his condition almost unique.
In May 2004 Reuben's parents went to see Mrs Wright who works at The Orchard Clinic for Complementary Medicine in Amersham, Bucks.
It was there that they discovered Reuben lacked two amino acids called leucine and isoluceine.
In 2006 he was started on a series of dietary supplements, checking his blood levels every three months. As the research progressed they found Reuben stopped needing transfusions and went into remission.
Now he no longer needs blood transfusions.
'We are dumbfounded at how successful it has been. We did live in hope but always had the doubt as all the medics were saying there was nothing else we could do,' said Michelle, a teacher.
'It just shows that parents should never give up. I'm not criticising the medical profession at all - they did all they could. But this shows that there's always another avenue.
'He is continuing his medication because we don't know enough about the treatment yet to know he won't relapse, but otherwise he is just a normal, happy eight-year-old boy.
'It's amazing that we have been so successful and we would be so proud if we have contributed to this groundbreaking research which could potentially help so many people.'
The family, from Gomersal, West Yorkshire, have so far raised £70,000 to help fund the research programme at Imperial College London.
Dr Jose Delafuente, an eminent haematologist at Imperial College, London, who is running the study, said: 'Reuben has been given amino acids as part of a diet of supplements and this seems to have a positive effect on him.
'We may learn lessons from this which help in the fight against cancer.'