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Mum wants justice after CJD cover up

Campaigner whose son died of human form of mad cow disease to lobby MLAs

By Joe Oliver
Sunday, 11 January 2009

 CJD victim Jonathan Simms and his father Don.

CJD victim Jonathan Simms and his father Don.

A campaigning mum is set to visit Northern Ireland in her quest for justice after the devastating death of her son from the human form of ‘mad cow’ disease.

Freelance journalist Christine Lord is planning to address members of the Assembly and family groups — as fears grow over a new wave of the killer brain bug.

She also hopes to set up a private meeting with the family of west Belfast man Jonathan Simms — the world’s longest-known survivor of variant Creutzfeldt-Jakob Disease (vCJD).

At 24, Jonathan is the same age as her son Andrew who died just over a year ago.

Since then — and following Andrew’s dying request — Christine has campaigned relentlessly to expose the key players behind the BSE scandal and the horror of vCJD.

Christine, from Southsea, Hants, recently petitioned Prime Minister Gordon Brown in Downing Street to release confidential documents about Government policy regarding BSE.

She told Sunday Life: “The cover up has gone on too long — it’s time we had justice. My beautiful, gentle boy was reduced to a shell. He had a terrible and distressing death.

“He was blind, deaf, quadriplegic and unable to recognise or remember anything or anyone. If the Government and senior officials had not ignored evidence and withheld crucial information, then all the victims of vCJD, including my son, would still be alive.”

Christine has already been in touch with former first minister Ian Paisley and was overwhelmed by the letters of support she received from Northern Ireland since telling her harrowing story in a BBC documentary.

“I wrote to Dr Paisley because I was aware that one of the victims of vCJD in Northern Ireland was a member of his party,” she said.

Andrew Hunter, who was just 27, was a DUP member of Newtownabbey Borough Council and died from the disease at his home in Rathcoole in April 2002.

The first person from the province to contract vCJD was 30-year-old Maurice Callaghan from west Belfast. He died in 1995, leaving a wife who was pregnant with their second child, and a daughter.

The first wave of vCJD, caused by eating infected beef products in the 1980s and early 1990s, has been responsible for 164 deaths.

All victims belonged to a gene type known as MM. Clinical tests suggest that new sufferers have an MV gene type, although this cannot be confirmed until a brain biopsy is carried out after death.

But the possibility has raised concerns that the illness may have a longer incubation period.

Christine does not know how Andrew contracted vCJD, but revealed that she stopped giving her children meat when the first fears where raised.

She believes he may have been carrying it in his system before 1994, although he showed no symptoms until the end of 2006 when he was initially told he was “depressed”.

Her daughter Emma (18) has shown no sign of infection.

“The disease affects predominantly young people in their teens and twenties,” she said.

“Its agent, BSE, was given free rein again and again to enter the food chain, wreck lives, families, careers, homes and futures. There was a wealth of scientific knowledge that BSE was harmful to humans, but they still allowed the most toxic materials into the food chain to be ingested by infants and children.

“They did nothing to stop the threat to school meals, baby food and the infected serum in childhood immunisations.”

Christine decided against giving her son pentosan polysulphate — the blood-thinning and anti-inflammatory therapy previously only tested on animals.

“I know the Simms family in Belfast had to fight a battle in the courts to get it for their son and I am genuinely delighted to hear the consensus that he is no longer terminally ill,” she said.

“But it was something I discussed with my son and one of the reasons I would very much like to meet the Simms family.

“When I’m in Northern Ireland I want to meet the political parties across the whole spectrum and, of course, I want support for my petition which already has thousands of signatures.”

She added: “My son’s death was totally avoidable.

“Those in the Conservative government at the time and their advisors knew at the earliest stages that BSE had severe implications for human life.

“They held the smoking gun that killed my son and many others. I want them publicly and legally held accountable.

“That way I can finally win justice for Andrew and all victims of vCJD past, present and, tragically, those still to come.”

The Government’s chief adviser on vCJD warned recently there could be a second wave of deaths over the coming years involving anything between 50 and 350 people.

l To visit Christine’s website click onto www.justiceforandy.com

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I feel like this mother is overreacting. vCJD is caused by prions (altered proteins found mostly in your neurons) and the idea that these could be found in baby food and vaccinations is ridiculous at best and hysteric and nonfactual at worst. vCJD is just another food-borne illness (5,000 deaths in the US per year) and you blame the government for not doing what the beef companies themselves are supposed to do? I understand your anger, but don't let it spill out to where it's not deserved.

Posted by Alec | 05.08.09, 22:44 GMT

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last year in november my father also died of sporadic cjd after three months to the day of first having problems speaking. he had never been in hospital, received a blood transfusion, but had always loved his beef. he had never eaten a beef burger in his life, but was mortified when t.bone steaks where pulled off the market. after all as he said that was where the flavour was, he would also cook ox tail it made wonderful sauce and soup. having been told by his g.p. that he may of had a stroke go home you will be alright, he was then admitted to the queen elizabeth hospital birmingham i have been trying to get answers to the lack of care they gave him since the beginning of this year ignored so far. we had to fight to have my father home to die and i too prayed for him to die as it was such torture to watch. to all victims and their familys which ever strain they may have my prayers go out to you it is something no family will ever be able to get over. though the government seem to have

Posted by louella | 27.04.09, 15:21 GMT

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hello im also disgusted about this terrible didease my heart goes out to all victims
my father died last august of sporadic cjd
the true numbers of people infected from this cruel disease will never get out i joined an american web site for cjd victims and its unbelievable the amount of people who have died from cjd
my dad died in august last year he suffered a horrible death
i looked after him but in the end i prayed that he would die peacfully and he did with all his family around him
the trauma this caused my family was unbelivable i dont think i will ever get over loosing him

Posted by carla | 11.02.09, 11:02 GMT

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