Mum forced to bury her 12-year-old son for a THIRD time

by · Mail Online

A mum has told how she faces the trauma of having to 'bury' her son for a third time as she battles hospital chiefs to find out the truth about medical tests carried out on him before his death at the age of 12.

June Bayley has spent over two decades seeking answers after the death of her son Ben from a rare brain disease.

The youngster was buried in 1997 but two years later she discovered his brain had been removed during an autopsy so medical research could be carried out into the rare disorder than ended his life.

A second burial was held and now the 65-year-old fears she will have to hold a third service after being told DNA from her son could still be held at a London hospital.

June said:' For any mum to have to bury their child is not something anyone should have to go through, but to have a second burial is worse. Now I could have to have a third burial if I can get back the DNA samples that were taken without my consent.

'I just want my whole son back and to have all of him in one place. I want to place a stone over his grave so that no one else can take anything.'

June Bayley has spent over two decades seeking answers after the death of her son Ben from a rare brain disease
Ben (pictured)- was born with the rare brain disease Dentatorubal-Pallidoluysian Atrophy having inherited it genetically from his father Francis who died from the same condition at the age of 32 
Mum June said: 'I just want my whole son back and to have all of him in one place. I want to place a stone over his grave so that no one else can take anything'

Her son Ben was born with the rare brain disease Dentatorubal-Pallidoluysian Atrophy (DRPLA) having inherited it genetically from his father Francis who died from the same condition at the age of 32. Sufferers have a life expectancy of between 8-16 years.

After Ben died in 1997 a funeral service was held but two years later she was informed that his brain had been removed during an autopsy so that it could be examined by specialists trying to find out more about the disorder.

Samples from parts of his other organs were also removed and in 2001 they were returned to Mrs Bayley who lives in Ely, Cambridgeshire. A second burial was held that same year.

'At the time I had no idea that my son's brain had been removed when his body was returned to us. He was not an organ donor and I had not given permission for it to be removed. I had told doctors that I did not want his organs removed, and certainly not his brain.

'It was devastating to know that parts of him had been taken without my consent.'

Bosses at the world famous Addenbrooke's Hospital, Cambridge, later admitted the child's brain had been removed for research.

Mrs Bayley, who has three grown up children, is now engaged in a fight to secure the return of DNA samples -believed to be skin or blood cells – from Guy's Hospital in London
After Ben (pictured) died in 1997 a funeral service was held but two years later she was informed that his brain had been removed during an autopsy

They also returned slides that contained samples of other organs.

Mrs Bayley, who has three grown up children, is now engaged in a fight to secure the return of DNA samples -believed to be skin or blood cells – from Guy's Hospital in London.

She has a meeting with hospital chiefs next month where she will push for the return of the microscopic cells.

'It might not sound like very much, but it means so much to me and my family. All I have ever wanted to know is all of my son is buried and there are not parts missing, she said.

'It has been a bit of a crusade, but I will fight for all of my children. I will take legal action if necessary to get them back. They belong to Ben and should be with him and not in some genetic lab.

'Once I have them back they will be with Ben and I will make sure there is a stone over his grave so that no one can ever take any part of him again.'

Mrs Bayley is convinced that the cause of her son's death is so rare that genetic specialists wanted to study his DNA to find out more about the disease.

She contacted University College Hospital in London earlier this year in the hope they could provide answers as she believed her son was registered with their genetics unit since 1992.

Mrs Bayley is convinced that the cause of her son's death is so rare that genetic specialists wanted to study his DNA to find out more about the disease

A spokesman for the hospital denied they were involved.

A University College London Hospital spokesperson said: 'Cambridge University Hospitals recently made us aware of Ms Bayley's concerns.

'We have tried to trace our records from 33 years ago but found no evidence of tissue being held at UCLH.'

June added: 'I know nothing will ever bring back my Ben but I still want to know the truth about what happened and will continue to fight until he is finally laid to rest complete.'

A spokesperson for Guy's and St Thomas' NHS Foundation Trust said:

'We apologise to Ben's family for any distress we may have caused, and we recognise how difficult the circumstances are when a child dies. We will work with Ben's family to address any concerns.'

A hospital source said there is no evidence of any research or tests on cells after 1990.