A Suffolk mum believes newly-acquired documents show her son's condition, a rare brain disease, was followed throughout his life by doctors for genetic testing.

June Bayley’s son Ben Mallia, who had the rare brain disease Dentatorubal-Pallidoluysian Atrophy (DRPLA), died from pneumonia in 1997 and around 18 months later his family, who lived in Hargrave, near Bury St Edmunds, discovered some of his organs had been removed without parental permission.

Bosses at Addenbrooke’s Hospital, Cambridge, admitted the child's brain was taken for research, without the family being told, but said no other organs had been removed. 

A post-mortem report at the time stated his spinal cord was removed, but the hospital insisted this had been a "typing error".

East Anglian Daily Times: Ben Mallia, who had the rare brain disease Dentatorubal-Pallidoluysian Atrophy (DRPLA)Ben Mallia, who had the rare brain disease Dentatorubal-Pallidoluysian Atrophy (DRPLA) (Image: June Bayley)

Now, Ms Bayley, who has three other children and six grandchildren, said she has seen documents containing communication between doctors, including now-deceased Professor Anita Harding at The National Hospital in Queen's Square, that have made her believe her son was registered with University College London Hospital's (UCLH) neurological genetics department since 1992.

This has led her to think there was always a plan for her son's organs to be removed for research following his death, despite her refusing permission. 

"When Ben was diagnosed in 1992 I said no to them taking his organs," she said.

"He suffered enough while he was alive, I said you leave him alone when he dies.

"Then to find out only last year that Ben was registered with neurological genetics.

"I am not a mum that is going to go away, I fight for all my children." 

East Anglian Daily Times: June Bayley with a picture of her son, BenJune Bayley with a picture of her son, Ben (Image: Newsquest)

She said she believed the hospitals saw Ben as "the last piece of the neurological puzzle" and added: "He was being followed by all the hospitals throughout his life."

She also fears that some of Ben's tissues could still remain in the hospitals.

"It has been a nightmare of a journey, I just want it resolved now," she said.

"It is horrible because you are made to feel like, where do you go from here? What do you do? It's like wow, can they actually really do all this without permission?

"It feels like it is some kind of cover-up. It just doesn't sit right," she added.

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."

East Anglian Daily Times: Ben Mallia with his brother ScottBen Mallia with his brother Scott (Image: June Bayley)

Ashley Shaw, medical director at Cambridge University Hospitals, said: "June Dunn has our continued sympathies for the devastating loss of her son, Ben.

"Nothing has changed since our correspondence with her lawyers in 2001, but in response to her latest concerns, NHS Resolution arranged a further meeting between her, ourselves, and NHS Resolution. NHS Resolution will feed back to her directly with its conclusions in due course.

"To clarify, the only organ retained after her son’s post-mortem examination at CUH was the brain. This was returned to Ms Dunn in 2001 by funeral directors, together with all the paperwork relating to this case and a number of slides containing tiny pieces of tissue from the lung, liver and pancreas used for microscopic examination at the time of the post-mortem.

"The note suggesting the spinal cord had been retained was a transcription error and later corrected. No spinal cord was retained. Nothing else was removed or retained.

"Furthermore, we are not aware of any retained tissue being present at any other hospital.

“Our thoughts remain with Ms Dunn and we hope our rigorous inquiries offer her additional reassurance."