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
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.
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
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.
she gets upset when her mum forgets things.
horrifying to see my daughter regress as she has done,” Kevin says.
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.
Sources: Daily Mail, BBC, Metro