June Dunn, formerly from near Bury St Edmunds, is planning a third burial for her son Ben Mallia after it transpired a hospital had been storing his DNA, she says without consent
A mum said having to bury her child who died in 1997 for a third time was ‘heart-breaking’, after discovering a hospital had stored his DNA – and hopes for a public inquiry.
June Dunn, formerly of Hargrave, near Bury St Edmunds, has been on a quest to uncover the truth about what happened to her 12-year-old son Ben Mallia’s body after he died.
Ben had a rare brain disease called DRPLA and died of bilateral bronchopneumonia in August 1997. Eighteen months later, June learned organs – including his brain - had been taken after his death, without permission.
Last spring, June, who now lives in Fordham, Cambridgeshire, made contact with each hospital that had looked after her son to check what medical information they had on him or human material.
‘Out of the blue’ it turned out Guy's and St Thomas' Hospital, in London, had been storing samples of Ben’s – June said without her permission.
Guy’s and St Thomas’ NHS Foundation Trust has apologised to Ben’s family for any distress they may have caused.
June, 65, is now planning to rebury her son at Bury St Edmunds Cemetery, once the six vials of her son’s DNA have been returned to her.
She said: “It’s just mentally draining, it’s heart-breaking, just even talking about it. I feel like it’s a nightmare and I need to wake up.”
She said the DNA was ‘what made him who he was, an individual’.
She added: “I want them [the samples] back and I want them put back with my son. They are part of my son.”
June wishes there could be a public inquiry to find out what every hospital that treated her son has got – so it’s the last burial she has to do.
“It’s very unfair for any parent to have to bury their child once, but to have to bury your son twice and now a third time – I don’t want it to get to a fourth, fifth and sixth.”
June says she is still battling two other hospital trusts for the return of samples, with hopes they will be returned in time for the third burial.
She spoke highly of L Fulcher Funeral Directors, in Bury, which has offered to collect the vials from Guy's and St Thomas' Hospital in London, and will also rebury Ben at no financial cost to her.
June, a grandmother-of-six, said the latest developments in her fight to get to the truth about what happened to Ben after he died had re-triggered her PTSD (post-traumatic stress disorder) – that had been diagnosed because of her ordeal.
She added: “It’s constantly there. I’m going backwards, not forwards.
“You function and you learn to smile and you learn to crack a joke, but inside it’s constantly there and now it’s just like ‘oh my God, I have got to go through that again’.”
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.”
The trust said it was standard practice to keep small numbers of cells prepared for testing and stored as back-up in case repeated testing was required. However, there was no evidence it had conducted any research, or performed any further testing after 1990.
