Boy with baffling illness so rare it does not have a name is cured by his PARENTS
By Daily Mail Reporter
Last updated at 3:20 PM on 10th February 2009
The dedicated parents of an eight-year-old boy with a devastating blood disorder have amazed doctors by finding a cure for him after refusing to give up hope.
Reuben Grainger-Mead’s illness, which doctors said was like living with a ‘permanent hangover’, was so rare that it still does not have a name.
But after parents Peter Mead and Michelle Grainger-Mead began a process of painstaking research they found ordinary dietary protein supplements relieved his condition.
Reuben Grainger-Mead and parents
Breakthrough: Reuben Grainger-Mead and parents Michell and Peter
And medics now believe the amino acid treatment could also be a breakthrough for sufferers of cancer and other diseases and have launched an official study.
Reuben’s heartening story mirrors that of Lorenzo Odone, who was the inspiration for the film Lorenzo’s Oil, starring Nick Nolte and Susan Sarandon.
Despite being given just two years to live at age six, he survived until he was 30 after his parents Augusto and Michaela discovered a treatment, which took the form of a dietary supplement involving olive oil.
Before being successfully treated Reuben, from Gomersal, West Yorkshire, had required painful monthly transfusions because his red blood cell count was so low.
Doctors believe his condition is unique, but said it is similar to Diamond Blackfan Anaemia (DBA) - but some of his symptoms were very different.
As he was growing up, he had a low immune system so he constantly fell ill and suffered from ailments like eczema and asthma.
He was weak and struggled to speak, his growth was stunted and he was also 18 months behind other children with his all-round development.
His heart had to work much harder, giving him a fast heartbeat - three or four times quicker than normal - leaving him vulnerable to heart attacks.
When Reuben was examined at the age of two, doctors compared his condition to living with a ‘permanent hangover’.
And after countless tests, his parents were given the shattering news that doctors were powerless to help their son.
But Mr Mead, 45, and Mrs Grainger-Mead, 39, scoured the Internet for years looking for alternative therapies, and considered acupuncture and Oriental therapy, before turning to nutritional consultant Diana Wright.
Lorenzo's Oil
Inspiration: The film Lorenzo's Oil, starring Susan Sarandon and Nick Nolte
Mrs Wright discovered Reuben lacked certain vital amino acids, proteins, in his body, so he was put on a course of dietary supplements which were mixed into his food and drink, with incredible success.
He is now a normal, healthy eight-year-old who loves playing with pals and riding his bike. He is even catching up to his friends in height.
At his last blood count, he had an above average number of red blood cells.
The youngster, who had 25 one-pint blood transfusions while ill, has not needed one for three years thanks to his regime.
Mrs Grainger-Mead, a teacher, said: ‘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.’
Before finding the treatment, Reuben’s parents feared he would die prematurely.
Mr Mead, a supply chain manager, said: ‘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.’
The astonishing success of Reuben’s treatment has led to doctors planning a study to see if similar therapy works on other ill children and adults.
It was partly funded with £70,000 raised by his parents.
Dr Jose Delafuente, an eminent haematologist at Imperial College, London, who is running the research, said: ‘Reuben has been given amino acids as part of a diet of supplements and this seems to have a positive effect on him.
‘They seem to be helping his cells grow normally and as a result he is starting to grow properly.
‘There are about 100 children suffering from DBA in the UK, and one of the features of this condition is that they have a great risk of developing cancer, particularly leukaemia and bone cancer but also many other cancers.
‘This is because of a protein defect in the blood.
‘There is early evidence that using amino acids may overcome this problem with the protein, and ultimately we hope the risk of DBA sufferers developing cancer will be abolished.
‘So we may learn lessons from this which help in the fight against cancer.
‘DBA sufferers have a life expectancy of around 40 so this is highly important research.’
Reuben takes a daily cocktail of six protein supplements, involving powder and tablets, with meals and drinks. It costs around £10,000 a year.
Nutritional consultant Mrs Wright, who works at The Orchard Clinic for Complementary Medicine in Amersham, Buckinghamshire, said: ‘In May 2004 we discovered Reuben lacked two amino acids called leucine and isoluceine, so we started him on a series of dietary supplements, checking his blood levels every three months.
‘In other words you are giving the body the tools to fix a problem.’
Mrs Grainger-Smith added: ‘It’s amazing that we have been so successful and we would be so proud we have contributed to this groundbreaking research which could potentially help so many people.’
The family have set up their own website at:
www.reubenandfriends.orghttp://www.dailymail.co.uk/health/article-1139624/Boy-baffling-illness-rare-does-cured-PARENTS.html#-----------------------------------------------------------------------
What is your opinion?