A remarkable grandmother who heartbreakingly lost five members of her family to Huntington's disease has been presented with an award.
Doreen Spiers, 94, lost her first husband, Alan Catchpole, her son Brian, daughter Alison and granddaughters Alex and Helen to the terrible condition.
Huntington's, which is caused by a fault gene, results in parts of the brain becoming gradually damaged over time.
There is no cure for the disease, which is inherited from a person's parents, with patients gradually deteriorating and usually dying after a period of up to 20 years.
It is also devastating for those whose loved ones are affected, with many become full-time carers.
Mrs Spiers, who lives in Cheltenham, had the physical and emotional turmoil of the disease affecting first Alan and then two of their children.
Alan died in his early 50s and Brian and Alison were in their 40s when they passed away, reports GloucestershireLive.
Alex reached 39 and Helen was 40, before they also fell victim to the disease.
But while so many tragic losses would leave most of us feeling incredibly unlucky and perhaps bitter, Mrs Spiers takes a different view.
Her Christian faith means she accepts what happened with a calmness and a belief that it was part of God’s overall plan.
She said: “The Lord was there all the time and kept me going. I couldn’t have managed it without him.
“You need something. When it was really bad, I could just sit in a corner and pray and that was that. You were helped.”
Mrs Spiers, who has just been presented with a glass trophy by the Huntington’s Disease Association for helping to found the national charity 50 years ago, said she was faced with a stark choice when her husband became so ill.
She said: “You’ve got a choice - go on looking after them or not. Some people just leave it. They can’t cope. It takes some coping.
“Alison’s husband left her. He just couldn’t cope.”
People have a 50 per cent chance of getting the disease from their parents and there is a test they can take if they want to find out whether that will happen. Mrs Spiers’ other daughter, Marsha, is 70 and has yet to develop the condition.
Mrs Spiers, who also has three grandchildren and two great grandchildren who are still alive, said some patients become violent and others lose control of their limbs - fully testing the resolve of their carers and loved ones.
She said: “They change but you don’t stop loving them. Fundamentally, they still understand you and they still know you. It’s not like dementia.”
She started raising awareness and fundraising for a local form of the charity, called Combat Huntington’s, 10 years before the national organisation was formed. She was keen to make people aware of the disease at a time when many knew little or nothing about it.
Even now, there will be many people who have never heard of it and she wants everyone to consider making a donation to the Huntington’s Disease Association. It presented her with her award at an event in Liverpool, leaving her with a great sense of pride.
Mrs Spiers, whose second husband, Douglas, died from a heart attack 30 years ago, added that she wanted to thank the people who have helped her with her fundraising over the years.
