A mother has told how she is coping with the trauma of having to “bury” her son for a third time as she battles hospital bosses to uncover the truth about medical tests carried out on him before his death at the age of 12.
June Bayley has spent more than two decades searching for answers following the death of her son Ben from a rare brain disease.
The young man was buried in 1997, but two years later he discovered that his brain had been removed during an autopsy so that medical research could be carried out into the rare disorder that ended his life.
A second funeral was held and now the 65-year-old fears she will have to hold a third funeral after being told her son’s DNA could still be held in a London hospital.
June said: “For any mother to have to bury their child is not something anyone should go through, but having a second burial is worse.” Now I might have to have a third burial if I can recover the DNA samples that were taken without my consent.
‘I just want my son back whole and have it all in one place. I want to place a stone on his grave so that no one else can take anything.’
June Bayley has spent more than two decades searching for answers following the death of her son Ben from a rare brain disease.
Ben (pictured): He was born with the rare brain disease dentatorubal-pallidoluysian atrophy and inherited it genetically from his father Francis, who died of the same condition at the age of 32.
Mom June said, “I just want to have my whole son back and have him all in one place.” I want to put a stone on his grave so that no one else can take anything.’
His son Ben was born with the rare brain disease dentatorubal-pallidoluysian atrophy (DRPLA), which he inherited genetically from his father Francis, who died of the same condition at the age of 32. Those who suffer from it have a life expectancy of between 8 and 16 years.
After Ben’s death in 1997, a funeral was held, but two years later he was informed that his brain had been removed during an autopsy so it could be examined by specialists trying to discover more about the disorder.
Samples of parts of his other organs were also taken and in 2001 they were returned to Mrs Bayley, who lives in Ely, Cambridgeshire. That same year a second burial took place.
‘At the time I had no idea that my son’s brain had been removed when the body was returned to us. He was not an organ donor and I had not given permission for it to be removed. He had told doctors that he did not want his organs removed, much less his brain.
“It was devastating to know that parts of it had been taken without my consent.”
Bosses at Cambridge’s world-famous Addenbrooke’s Hospital later admitted the boy’s brain had been removed for research.
Mrs Bayley, who has three grown-up children, is now embroiled 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 was held, but two years later he was told his brain had been removed during an autopsy.
They also returned slides containing samples of other organs.
Mrs Bayley, who has three adult 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.
He has a meeting with hospital bosses next month where he will press for the microscopic cells to be returned.
‘It may not seem like much, but it means a lot to me and my family. “The only thing I always wanted to know is that all of my son is buried and that no part is missing,” he said.
‘It has been a kind of crusade, but I will fight for all 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 get them back, they will be with Ben and I will make sure there is a stone on his grave so no one can 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 learn more about the disease.
She contacted University College Hospital in London earlier this year in the hope they could provide her with answers as she believed her son had been 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 learn more about the disease.
A hospital spokesman denied they were involved.
A spokesperson for University College London Hospital said: ‘Cambridge University Hospitals recently made us aware of Ms Bayley’s concerns.
“We have tried to trace our records back 33 years, but we found no evidence that tissue had been preserved at UCLH.”
June added: “I know nothing will bring my Ben back, but I still want to know the truth about what happened and I will continue to fight until he is finally fully rested.”
A spokesperson for Guy’s and St Thomas’ NHS Foundation Trust said:
‘We apologize to Ben’s family for any distress we may have caused and recognize 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 cell research or testing after 1990.
