‘I want to make memories while I still have them' – 39-year-old Hitchin woman set for America road trip after dementia diagnosis
- Credit: Archant
A 39-year-old Hitchin woman who has been diagnosed with dementia is fundraising to create memories with her husband before her condition ‘takes her memories from her’.
Laura Borrell gave up studying for a law and became afraid to leave the house after she became easily confused, forgetful and struggled with speech.
In June 2015 – aged just 38 – she was diagnosed with frontotemporal degenerative dementia, which usually comes on in people aged 65 and older.
Medics do not know how quickly Laura’s cognitive functions will decline, but have admitted she will lose her short-term memory, forget familiar people and surroundings and eventually become reliant on husband Philip, 41, a scrum master, for care.
“I haven’t even had my 40th birthday but already I feel like life as I knew it is over,” said Laura, who went to school at Thomas Alleyne in Stevenage.
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“Not knowing how long I have left before I need further care is torture. I might wake up in five years’ time and not recognise my husband, or it could happen in six months, we don’t know.”
The couple created a GoFundMe page in the hope of raising £2,000 for a road trip to America before Laura’s memory declines beyond repair, and have now reached their target.
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Laura said: “All I can do is try and make as many memories as possible while I still have them.”
Having suffered symptoms including chronic tiredness and painful mobility growing up, Laura was diagnosed with Ehlers-Danlos syndrome, lupus and blood clotting condition Hughes syndrome at St Thomas’s Hospital in London at the age of 32.
Off the back of these diagnoses, Laura was told she would spend the rest of her life on medication and advised never to have children as pregnancy would put her health at serious risk.
She said: “Though it was good to get answers about my health after all those years, I was utterly heartbroken by the prognosis.
“To learn I would never conceive or carry a child was devastating as I‘d always longed to be a mum.
“Over the next few years my conditions seemed to inhibit every aspect of my life.
“In the run-up to my wedding to Philip in August 2011 I was plagued with chronic tiredness and vomiting. At one point it looked like we’d have to postpone the day, but luckily when it rolled round I was okay.”
Four years later, in June 2015, Laura began slurring speech and she got ‘muddled’ with words.
She recalled: “I was two years into a law degree at the time and suddenly I was struggling with my language in a way I never had before.
“I’d confuse certain words for others and sometimes would forget words entirely. It meant I got muddled and couldn’t keep up with what lecturers were saying.
“There were changes in my personal life, too. My mum would call for a chat and I’d be unable to recognise her voice, despite the fact we talk all the time and are extremely close.
“Though I knew things weren’t right I didn’t want to acknowledge what was going on because I was scared of what my symptoms might mean.”
Over the next four months Laura’s symptoms became progressively worse and in November she dropped out of her law degree, despite having another two years of the course still to complete.
NHS medics began brain scans and blood tests and Laura tells how, while she was waiting for a diagnosis, her symptoms worsened. She spent £2,000 on private consultations to hurry through tests.
About her diagnosis of frontotemporal degenerative dementia, she said: “I heard the word ‘dementia’ and felt sick. Like most people, I associated the condition with elderly people – whereas I’m not even 40 yet.
“I cried at the thought of losing my independence and not recognising my own husband. It felt like a shadow had just been cast over the rest of my life.”
It is thought that Laura has an autoimmune form of the condition that could be linked to the fact she has lupus and Ehlers-Danlos syndrome.
In October, an incident where Laura was walking near her home and did not recognise the familiar surroundings left her scared to leave the house.
She recalled: “It was the place I’d grown up but suddenly it had become alien to me and I had no idea where I was.
“It was terrifying. I called my mum and husband and police came out to find me and bring me home.
“Since then, I’ve been afraid to go too far on my own.”
Now, Laura spend days at home reading and playing the flute in an attempt to keep my mind as ‘agile as possible’.
She said: “I’m determined to do all I can to fight the condition and keep my memory.”
Laura says she has lost friends over the condition because ‘people don’t know what to say’ to her, but that husband Philip has been ‘her rock’.
In November, they decided to fundraise £2,000 to take a trip to America together and, after reaching the target in the past few days, plan to create a further bucket list to make more memories with any extra funds.
To donate visit www.gofundme.com/laura-frontal-temporal-degeneration-2u9dyay4.