Rachel Potter, a mom of one from Derbyshire in the UK, was diagnosed with the extremely rare genetic Gerstmann-Sträussler-Scheinker disease (GSS) in 2016. She’s thought to be the youngest person in the United Kingdom to suffer from the disease, Daily Mail reports.
The former childcare nurse, who is now 33 years old, has had the deadly disease for nearly two years now.
She’s no longer able to write, work, drive and needs help performing even simple tasks like bathing.
Rachel inherited the rare dementia from her mother, June, who’s now in palliative care, BBC reports.
Rachel first noticed that something was wrong with her after she’d been to visit her father, Kevin Potter (61), in Nottinghamshire.
While driving home, Rachel got lost because she suddenly couldn’t read the road signs or understand her satellite navigations, Daily Mail reports.
Her heartbroken dad Kevin recalls the day that his daughter phoned him, confused and scared.
“We phoned her for hours and she didn’t pick up,” he said.
“Eventually she picked up and said she was in a pub in Wakefield. She was very upset and said she hadn’t been able to read the signs on the motorway or follow the directions on the satnav and she didn’t know where she was.
“From that point, we got in touch with a GP.”
Rachel was then referred to Sheffield Hospital and the University College Hospital in London to discover what was wrong with her.
“It’s absolutely heart-breaking, we were devastated when we found out.
“She’s not the same person she was. She was a bubbling, outgoing girl with a massive circle of friends, and she loved working and socializing. She travelled all over the world.
“Her world now is a few close friends, her family and her carers,” Kevin told Metro.
He refers to this disease as “a ticking time bomb in our family”, as Rachel’s grandfather died of the illness and her mother is also living with it.
“As time goes on her relationship with Brooke [Rachel’s eight-year-old daughter] will be affected as the condition gets worse,” he says
“Brooke has coped admirably and shown remarkable maturity for someone so young. She can see what’s happening to her mum but I don’t know if she knows the full extent.
“Obviously she gets upset when her mum forgets things.
“It's horrifying to see my daughter regress as she has done,” Kevin says.
“When I retired I wasn’t expecting to do this [take care of his daughter], but I wouldn’t have it any other way. Rachel is so loved and we all just want the best for our little girl.”
Kevin says his daughter’s condition is getting worse by the day and he’s set up a GoFundMe page so that the family can go to Disney Land before Rachel becomes too debilitated by the disease.