As Christine Lord’s son Andrew lay dying, she promised him that she would find out who was to blame for the disease that had slowly taken his independence and was now taking his life – a promise that she is determined to keep.
Andrew Black was diagnosed with the human form of the mad cow disease variant Creutzfeldt-Jakob Disease (vCJD) in July 2007 when he was 23 years old.
In December that year, aged just 24, Andrew died in his mother’s arms a shell of his former self. The disease had rendered him blind and deaf and he died a quadriplegic.
Just three years earlier Andrew had a promising career as a TV and radio producer ahead of him, working on shows with the BBC and talkSPORT. He had ambitions of becoming a children’s TV presenter and had just finished filming a pilot show.
Now with the help of artist Roger Hiorns, Andrew’s story will be told in the form of an exhibition in London along with the plight of other vCJD victims and Christine hopes that the exhibition will raise public awareness.
Christine, from Southsea, says: ‘I hope the exhibition will bring the issue back into the public domain and tell people that vCJD hasn’t gone away because it’s a ticking health timebomb.
‘If one in 2,000 people are carriers and it can lie dormant for up to 50 years then it’s only a matter of time before more people become ill. Roger wanted Andrew’s voice to be heard as part of this exhibition.
‘And I would urge everybody to go and see it because it has a huge range of things to see, and there’s some amazing works of art there.
‘It really encapsulates the whole campaign and there is a huge timeline of vCJD along with my book and images of Andrew.’
Christine, her daughter Emma, now 24, and Andrew all gave up eating beef when Andrew was five because of the uncertainty in its production.
I hope the exhibition will bring the issue back into the public domain and tell people that vCJD hasn’t gone away because it’s a ticking health timebombChristine Lord
But by the time of his diagnosis, Andrew had suffered from weak muscles, anxiety and pain for months leading doctors to suggest he may be suffering from MS or brain cancer.
By the time he was diagnosed with vCJD, six months before he died, he was so ill that his final diagnosis was one he never found out about.
Christine, 56, says: ‘He knew that something had been done to him.
‘Before he died he said to me, “find out who did this mum, and make sure it never happens again”.
‘He was a very intelligent young man but I never told him what it was, although he knew it was serious.
‘Now, I’m campaigning to get recognition for my son Andrew and justice for all the victims, because no one has ever been made accountable for this and someone needs to take responsibility.’
Research in the British Medical Journal suggests that one in 2,000 people could be carriers of the fatal disease.
Christine, a freelance journalist, continues in her quest to unveil the truth.
She says: ‘There didn’t used to be a test for HIV and the death rate was much higher, but since the test was introduced there is better treatment and I think the same can be done for vCJD, but the government just won’t listen.’
Key recommendations were brought to parliament last year encouraging an assessment on the risk of blood donors transferring the disease and also to look further into the misdiagnosis of vCJD in elderly people who are otherwise diagnosed with dementia, but they were rejected on the grounds that no test and no funding was available – although Christine questions this.
She says: ‘There is a test, but the government won’t recognise it. Scientists have worked on one but it can’t be used until the establishment says so.’
Variant CJD is contacted by humans after they have been exposed to bovine spongiform encephalopathy (BSE) the cow form of the disease.
Exposure can come in many forms from eating infected beef products before 1996, to receiving a blood donation from someone who carries the disease and from the disease remaining on routinely sterilised surgical equipment.
The majority of sufferers are in their teens and 20s, although the disease can lie dormant for up to 50 years once an individual has been exposed.
The oldest victim was 76 and the youngest just 14 years old.
Before the government banned mechanically-recovered meat being used for human consumption in 1996 – because of its link to mad cow disease – it could be found in products such as baby food, school dinners and even vaccines.
‘History is Now’
The ‘History Is Now’ exhibition is being held at the Hayward Gallery at the Southbank Centre in London.
Seven artists have come together to display different pieces looking at particular periods in cultural history and offering fresh perspectives.
The aim of the exhibition is to offer a different way of thinking about how society came to be as it is today.
Turner prize-nominated artist Roger Hiorns has brought together a number of items to document the crisis in the late 1980s and 90s.
Works at the exhibition include Christine’s book about Andrew’s death titled ‘Who Killed My Son?’, images of Andrew, artwork by Damien Hirst and an image of former agricultural minister John Gummer feeding his daughter a beef burger at the height of the mad cow disease scare in 1990 in an attempt to assure the public that beef products were safe.
This is the first time the subject has been tackled in exhibition form, and the items on display aim to highlight the impact of the disease and also offer a timeline of the events.
The exhibition is a ticketed event which opened on Tuesday, February 10 and closes on Sunday, April 26.
For more information visit southbankcentre.co.uk/historyisnow
Who killed my son?
Published in 2013, Who Killed my Son? details Christine’s account of Andrew’s final days and her investigation into what caused him to become infected with vCJD.
Now in the process of writing her second book, she is working with a production company to turn her first book into a screenplay.
And she is filming a documentary highlighting the plight of vCJD victims and their families.
Christine has been met with a large amount of support all over the world from families and victims of vCJD.
To contact Christine visit justice4andy.com