By James Somper
A 33-year-old mum is believed to be one of the youngest people in Britain ever to have been diagnosed with dementia.
Mum-of-one Rachel Potter, from Chesterfield, was diagnosed with the condition back in 2016 at the age of 31 after after relatives became concerned about her sudden memory loss.
Her devastated dad, Kev Potter, 61, said that his daughter isn’t the same person as she used to be – with the young woman now requiring visits from carers twice a day and is unable to write or walk without help.
Kev said: “Being able to walk any distance now is quite for painful for her and her handwriting has been reduced to a child’s scrawl.”
Doctors have told Kev that they believe Rachel to be one of the youngest people in the UK to have dementia. Her condition – Gerstmann–Sträussler–Scheinker syndrome – is a degenerative condition that affects the nervous system and gradually inhibits coordination, speech and muscle control.
Former UK Border Force official Kev said: “It’s absolutely heartbreaking – we were absolutely devastated when we found out.
“We can see the change in her.
“She’s not the same person she was, she was a bubbling, outgoing girl with a massive circle of friends who loved working and socialising. She travelled all over the world.
“Now, she can’t work or drive anymore.
“She’s deteriorated rapidly, her mobility is decreasing all the time as well as her cognitive skills.
“She can’t write properly anymore or cook.
“She has trouble with directions and finding her way.
“As time goes on her relationship with Brooke will be affected as the condition gets worse.
“Her world now is a few close friends, her family and her carers.”
The syndrome is a degenerative condition that affects the nervous system.
Both Rachel’s mum who is divorced from Kev as well as Rachel’s granddad have had the condition. Rachel’s mum, June, requires round-the-clock care and Rachel’s grandad died after battling the condition for six months.
Now Kev is concerned Brooke too could inherit the syndrome – but she may choose to never find out,
Kev said: “There’s a chance Brooke could have the gene too
“She won’t know until she’s 18 and that’s if she decides to have the test.
“It’s a ticking time bomb in our family.”
Kev said Rachel’s condition has created enormous pain in their family.
Relatives first became concerned about the 33-year-old in 2016 after she became lost while driving home from a visit to her father and stepmother.
Eventually, Rachel phoned her worried dad in a state of panic, not knowing where she was.
Kev said: “We phoned her for hours and she didn’t pick up.
“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.”
It was only after the GP referred Rachel to a doctor at Sheffiled Hospital and then University College Hospital in London that Rachel’s family were given the terrible news that she had Gerstmann–Sträussler–Scheinker syndrome.
Now, the mum-of-one requires help getting in and out of the bath as well as cooking in addition to doctor’s visiting her every six to eight weeks to do a series of cognitive tests.
But despite the care and support she receives, Kev said that Rachel’s condition is totally unpredictable.
Kev said: “Rachel’s doctors compare her test results to previous tests to see if she’s got any worse.
“They’ve been brilliant.
“The condition is so fluid, it’s like a wave. We have good days and bad days.
“We took her on a holiday recently and Rachel said she was walking to a shop which we could see directly in front of where we were staying.
“Half-an-hour went by and we didn’t see her. We were starting to get worried so I ended up calling security who eventually found her after two hours.
“She was very upset. Rachel walked past the caravan after getting lost.
“There have been a few other instances when I’ve taken her out and parked close by to wherever we’re going and she’s come out, looked at the car with me sat in it and walked away, completely lost.
“She’s started shuffling quite a bit so it’s becoming more difficult for her to walk.”
Kev said Brooke has shown strength beyond her years in coping with her mum’s condition.
He said: “She 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.
“When I retired I wasn’t expecting to do this, but I wouldn’t have it any other way.
“Rachel is so loved and we all just want the best for our little girl.”
Kev is raising money for his daughter and granddaughter: https://uk.gofundme.com/rachel-ampbrooke