A mother has told how her son was left unable to feed himself or even speak by the rare variant Creutzfeldt-Jakob disease.
Andy Black died five months after being diagnosed with the killer brain bug – the human strain of mad cow disease.
During that time his mum Christine Lord was forced to watch helplessly as the 24-year-old's condition deteriorated.
She kept a vigil at her son's bedside as she was forced to watch him die, holding him for four days after his brain died before he finally passed away at the family's Southsea home on December 16.
Now Christine, who is a journalist, has vowed to get justice for Andy and more than 200 people who have died from the disease in the UK.
She said: 'The memories of my son, the way he died and the fact it was avoidable will stay with me for the rest of my life.
'I was by Andy's side through all of this. For every procedure he went through I was holding his hand.
'People need to know there are people who are still in charge of this country who have allowed lives to be destroyed by CJD.'
It is believed Andy contracted CJD before 1994, but it can take years to develop. His symptoms started to show at the end of 2006 when he became tired and withdrawn.
However he was not diagnosed with the disease until July last year. Christine never told Andy he had the disease. From then, his condition deteriorated rapidly.
She said: 'They told me in a little room and then I had to go back in and say everything was all right.
'How can you tell at 24-year-old man he's dying from CJD?
'I had to cope with it. I'm his mum. I had to give Andy hope, even if it was just for a day.'
Christine Lord's quest for justice will be aired on BBC1's Inside Out programme at 7.30pm tomorrow.