News

Press

Yorkshire Evening Post - 07/01/2009

YEP photograph of the family WHEN Reuben Grainger-Mead was two years old he was diagnosed with blood disorder so rare doctors didn't even have a name for it. But six years later and Reuben has made a dramatic recovery – thanks to the dedication of his parents who have raised thousands of pounds and scoured the world seeking a cure.

Their story mirrors that of Lorenzo Odone, who was diagnosed with an incurable brain condition in 1984 aged six and given just two years to live. Despite overwhelming scepticism and opposition, his parents Augusto and Michaela never gave up hope and eventually discovered a cure for their son, which took the form of a dietary supplement involving olive oil. He died aged 30 in May last year.

Reuben's parents remain cautious about their 'discovery' but there is a glimmer of hope that it could prove even more miraculous and could even be used to treat cancers and other conditions.

Reuben has improved after taking tailor-made dietary supplements and the medical profession is so impressed that a major study is planned this year to see if the treatment works on other children.

Schooling

Reuben has now gone from needing a blood transfusion almost every month to not needing one for more than three years.

At one time he was very ill, his growth was impaired, as was his learning ability – he was about 18 months behind children of a similar age in terms of his schooling.

But now one doctor has described the treatment as a medical breakthrough and says it could even lead to a cure for some cancers.

The closest name doctors could come up with for Reuben's illness was Diamond Blackfan Amaemia (DBA), a condition which affects about 120 families in the UK. The main symptom of DBA is a reduction in the number of red blood cells, which carry oxygen around the body.

Reuben's father, Peter Mead, 45, of Gomersal, a supply chain manager for DePuy in Leeds, said: "Reuben was always pale as a child and he was always ill. He caught colds easily. We took him to the doctor and they agreed he was too pale and so referred him to hospital for tests and that's when he was diagnosed. A normal red blood cell count is something around 12-14, whereas Reuben's was 3.8."

The family embarked on a two-year hunt for a cure and knocked on just about every medical door they could think of, even tracking down experts in the US.

Development

Mother Michelle Grainger-Mead, 39, a teacher, said: "The doctors compared it to living with a permanent hangover. He was behind in his development, academically, physically and behaviourally.

"We tried everywhere we could. It was like banging our heads against a brick wall. I can remember the consultant at Jimmy's saying telling us they just didn't know what to try next. They were very supportive of us trying alternative treatments, however."

Eventually, Michelle and Peter's search took them to the door of Diana Wright, a nutritional consultant, who tested Reuben's blood and discovered he lacked certain vital amino acids, the so-called 'building blocks of life.'

Mrs Wright, who works at The Orchard Clinic for Complementary Medicine, Amersham, Buckinghamshire, said: "What we did was to test him biochemically and nutritionally. We discovered he lacked two amino acids called leucine and isoluceine, so we started him on a series of dietry supplements, checking his blood levels every three months."

The treatment was not cheap – the family has spent about £10,000 to fund the special cocktail of dietary supplements which keeps Reuben healthy.

Mrs Wright, who has worked with Reuben for the last four years but only met him in person last year, added: "As our research progressed, we found Reuben stopped needing transfusions and went into remission.

"In terms of what's happening, all our cells are made of DNA, which is our computer blueprint. The medical profession says you cannot change genetics but we have found you can change its expression. In other words you are giving the body the biochemical tools to fix a problem. None of this is scientifically proven yet, which is why it's so exciting."

The man behind plans for a major medical study into the treatment is Dr Josu Delafuente, 38, a paediatric haemotologist who works at Imperial College, London.

Conference

He said: "I became involved because I specialise in red blood cell disorders. About a year-and-a-half ago I took over the department role of leading this research into DBA and I went to the annual DBA conference and that's where I met Michelle and Peter.

"I immediately saw that they seemed to have had some success with Reuben's treatment.

"It mirrored the case of another boy with DBA in the Czech Republic and so it is very significant.

"Reuben has been given the amino acid leucine as part of a diet of supplements and this seems to have having a positive effect on him. He is starting to grow properly.

"There are about 120 DBA famililes in the UK and I am hoping to apply what we have learned from Reuben to a trial in 2009. We have now a better understanding of what might be happening in children with DBA.

"The trial is fundamentally important because it might help us to understand what is going wrong with cells affected by cancer. It's all to do with the way proteins are made, the growth of cells and how that is controlled.

"The supplements Reuben has been taking seem to be enabling his cells to grow normally. At the same time, we are going to take samples from the subjects in the trial. We may learn lessons from this which help in the fight against cancer."

For DBA sufferers the choices are limited – blood transfusions and steroid injections, which both damage the body's organs, and bone marrow transplants, which are difficult to come by and even then are not a cure-all. Mother Michelle, who has a degree in nutrition, said: "It's absolutely ground-breaking. If it is proven to work then the impact medically will be profound. Reuben was about 18 months behind but now he is near the top of his class."

The research programme which will study Reuben's condition and treatment could not have been made possible without the unstinting help of the charity Reuben and Friends, which was started by friends of Michelle and Peter and has so far raised more than £70,000 – money which will now help to fund the 2009 study.

Anyone who wishes to contact the Reuben and Friends charity can do so through Helen Hartley on 01274 875304.

TV, Radio and Press Coverage