A woman who has suffered from a "cruel" brain disorder that traps people in their own bodies for at least the fourth generation of her family is hoping a drug trial could offer hope to future sufferers.
Samantha Denison, 58, has neuroferritinopathy, a rare condition that affects a small number of families with roots in Cumbria.
She is taking part in a trial to see if an existing drug, deferiprone, can block the iron deposits in the brain that cause the disease.
The condition, discovered by doctors in Newcastle in 2001, usually leaves sufferers unable to speak or move and fully aware of the world around them.
Scientists believe there may be around 100 people worldwide with neuroferritinopathy, but their children may also carry the gene when they are diagnosed.
Those who discovered and named the disease say that before 2001 it was often misdiagnosed as Parkinson's or Huntington's disease.
A Newcastle scientist, Professor Patrick Chinarry, was so struck by the impact of the disease on patients and their families that he became determined to find a treatment or, better yet, a cure.
He is leading the Daphne trial at the University of Cambridge and describes the condition as "cruel" because it leaves patients "stuck", unable to communicate with those around them.
Entire families can be affected together, including four sisters from Cumbria, whose stories were broadcast by the BBC ahead of the Cambridge trial last year.
Mrs Denison, from Bradford, was the first person to have her brain scanned and recently returned to Cambridge for another MRI.
She now finds it difficult to walk and talk and says the disease has left a trail of devastation for her family.
“My brother has it, my dad has it, her mum has it and her mum has it,” she said.
Samantha’s daughter Steph knew she was at risk of carrying the same gene and had seen her grandfather suffer from Parkinson’s disease.
She said of her mother’s loss of ability to walk and talk: “She used to love to walk for long periods of time… she was bubbly and chatty.”
Steph was terrified that the same thing would happen to her, and even feared having children of her own.
“I don’t want them to grow up and see me go through what my mum went through,” she explained.
But she said the not knowing was so stressful that she finally agreed to get tested.
When the call came that she didn’t have the gene, she and her partner burst into tears.
They are now expecting a baby.