Mum told her stricken son: I’ll hold you when you die
THE horror of watching their only son Grant die from vCJD will never leave Thomas and Margaret Goodwin. The 30-year-old engineer, from Hamilton, succumbed to the human form of BSE in January 2009, only four months after his diagnosis. Nursed to the end by his parents, he was the first of a different gene type from previous British victims to show symptoms – leading experts to predict a second wave was under way in people who could carry vCJD for longer periods.
Speaking for the first time publicly about their loss, Mrs Goodwin reveals how the couple battled to care for their dying son, while facing ‘intimidation’ from representatives of the National CJD Research and Surveillance Unit in Edinburgh not to tell family or friends what he was suffering from.
Three years earlier, their son had been working in the Channel Islands and appeared to have everything to live for.
But then he started to become withdrawn, lost around three stone in weight and began to have trouble keeping his balance.
He was initially diagnosed with depression by his doctor, but specialists at Glasgow’s Southern General Hospital eventually revealed Grant had the human form of mad cow disease. His condition deteriorated rapidly and within three months, he could not walk or talk.
Tearfully, Mrs Goodwin recalled: ‘We decided to care for him ourselves and we didn’t realise how bad it was going to be. But he would cry and he would say, “How do I die? What happens when I die?” And I’d say, “Well, I’ll be holding you, and you’ll go to sleep, and then you’ll be in no more pain”.’
However, during visits to their home by CJD Research Unit staff, they found themselves the focus of more attention than Grant. Mrs Goodwin added: ‘They wanted us to hide the fact he was dying and not speak to anyone about it. They even suggested one afternoon it could be my fault for buying cheap meat. They made you feel guilty and I think that’s what they were trying to do, so I wouldn’t tell people.’
Grant died in St Andrew’s Hospice in Airdrie.
Mr Goodwin, who appears with his wife in a new documentary, Cows, Cash & Cover Ups: Investigating Variant CJD, along with other family members of victims from around the UK, reveals he sought out expert Professor John Collinge in the wake of Grant’s death to find out how their son could have caught the disease.
Mr Goodwin says: ‘He told me that the incubation could be up to 30, 40 or 50 years, and that he could have got it as an infant and not to look further than baby food. Our daughter is in her 30s now and she is absolutely petrified of finding out one day that, like Grant, she has vCJD because she was brought up on the same food as her brother.’
Today, the Goodwin family continue to call for a criminal inquiry and are still fighting to have his death added to the official statistics, despite the cause given on the certificate as vCJD.
Mr Goodwin said: ‘Nearly 200 people died and there are going to be more but nobody has ever been held to account.
‘Grant doesn’t even appear among the official number of vCJD victims because experts insisted the disease did not affect his particular gene type (MV). The others who had died before him were all MM gene types.’
Mr Goodwin added: ‘This disease has shattered lives and families. Everybody’s in the same boat. You need support, you need counselling because you just fall apart. But we’ve all been left high and dry without answers to questions that we all have.
‘I want an investigation into what killed my son and for people to admit they made mistakes which caused deaths.’
The documentary looks at the common practice in the food industry of grinding up dead animal parts – much of it from infected brain and spinal cord – in the 80s to produce mechanically recovered meat, which was then mass produced into beef products for the Armed Forces, as well as school and hospital dinners.
Ministers insisted there was no threat to people, despite experts secretly warning BSE could spread to humans.
Agriculture Minister John Gummer even famously appeared on TV in 1990 feeding a burger to his daughter.
Christine Lord, who helped produce the documentary, has written a book, Who Killed My Son?, about her son Andrew Black’s death from vCJD.
She said: ‘When I think about my son, the pain never goes.
‘When he was very ill, he begged me to find out what had been done to him and find out who was responsible and make them accountable for him and all the other victims. That’s what we plan to do.
‘I have spent my life since his death battling to find the answers so desperately needed and also helping other parents to protect their children, too, by exposing the extent of the BSE scandal.’
She added: ‘The Government knew the lethal consequences but they knew it would take many years before people started to die. They took a huge risk with my son’s life and the lives of others.’