Doreen Spiers was presented with an award by the Huntington’s Disease Association, the national charity she helped found 50 years ago
Image: Gloucestershire Live/Rob Jenkins)
A remarkable grandmother who heartbreakingly lost five family members to Huntington’s disease has been honored with an award.
Doreen Spiers, 94, lost her first husband, Alan Catchpole, son Brian, daughter Alison and granddaughters Alex and Helen to the horrific condition.
Huntington’s disease, caused by a faulty gene, causes parts of the brain to gradually become 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, as many become full-time carers.
Ms Spiers, who lives in Cheltenham, has had the physical and emotional turmoil of the illness, which first affected Alan and then two of her children.
Alan died in his early 50s and Brian and Alison were in their 40s when they died, they reported GloucestershireLive.
Alex reached 39 and Helen 40 before they also fell victim to the disease.
But while so many tragic losses would leave most of us incredibly unhappy and perhaps bitter, Ms. Spiers takes a different view.
Her Christian faith means she accepts what happened with a serenity, believing it was part of God’s overall plan.
She said, “The Lord was there all the time and kept me going. I wouldn’t have made it without him.
“You need something. When it got really bad, I could just sit in a corner and pray and that was it. They got help.”
Ms Spiers, who has just been awarded a glass trophy by the Huntington’s Disease Association for helping found the national charity 50 years ago, said she faced a difficult decision when her husband became so ill.
She said: “It’s your choice – keep caring for her or not. Some people just let it go. You can’t handle it. It takes some coping.
“Alison’s husband left her. He just couldn’t handle it.”
People have a 50 percent chance of getting the disease from their parents, and there’s a test they can take if they want to find out if that’s going to happen. Ms. Spiers’ other daughter, Marsha, is 70 and has yet to develop.
Ms Spiers, who also has three surviving grandchildren and two great-grandchildren, said some patients are becoming violent and others are losing control of their limbs – testing the resolve of her carers and loved ones.
She said: “They change, but you don’t stop loving them. Basically, they still understand you and they still know you. It’s not like dementia.”
She began raising awareness and fundraising for a local form of charity called Combat Huntington’s 10 years before the national organization was formed. She wanted 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 donating to the Huntington’s Disease Association. It presented her with her award at an event in Liverpool, which left her with great pride.
Ms Spiers, whose second husband, Douglas, died of a heart attack 30 years ago, added that she would like to thank the people who have helped her with her fundraiser over the years.
https://www.mirror.co.uk/news/uk-news/gran-94-loses-husband-daughter-27207576 Gran, 94, loses husband, daughter, son and two grandchildren to genetic disease