Campaign to raise money for 38-year-old suffering from dementia
- Credit: Archant
A 38-year-old woman who was diagnosed with dementia six months ago is fundraising to create memories with her husband before her condition ‘takes her memories from her’.
Laura Borrell, who grew up in Datchworth, gave up studying for a law and became afraid to leave the house after she became easily confused, forgetful and struggled with speech last year.
Heartbreakingly, in June at just 38 years old 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 who grew up in Hatfield, for care.
Laura said: “I haven’t even had my 40th birthday but already I feel like life as I knew it is over.
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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.”
Last month the couple created a Go Fund Me Page in the hope of raising £2,000 so they can make a road trip to America before Laura’s memory declines beyond repair.
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The couple, who have raised £1,600 so far, say they are in a ‘race against time’ to create special memories together.
Laura said: “All I can do is try and make as many memories as possible while I still have them.”
Laura suffered symptoms including chronic tiredness and painful mobility growing up.
At 32 she was diagnosed with Ehlers-danlos syndrome, lupus and blood clotting condition Hughes Syndrome at St Thomas’s Hospital in London.
Off the back of these diagnoses, Laura was advised she would spend the rest of her life on medication.
She was also 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.
Laura said: “Last December Philip and I drove past a pub and there was a sign advertising Christmas bookings, but I was reading it as ‘puddings’.
“I repeated the words over and over and Philip had no idea what I was talking about. I couldn’t understand why he didn’t get it.
“When we drove past the sign again he gently corrected me, but I was horrified. That was when I realised things were getting worse.”
She spent £2,000 on private consultations to hurry tests.
In June, she was diagnosed with Frontotemporal Degenerative Dementia.
Laura 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 was told my cognitive functions would become increasingly impaired and I was likely to forget familiar people, places and things and become more dependent on loved-ones.
“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.
She was told not much research has been done on this particular form of dementia, and that it could be influenced by levels of glucose to the frontal lobe of the brain, which controls cognitive functions.
Laura recalled: “In the weeks that followed I did my best to come to terms with the diagnosis.
“I felt like I had the mind of someone twice my age, though, physically, I was fine.
“Philip was so supportive but we were both devastated. We’ve only been married five years and should have been looking forward to a lifetime of good times.
“Instead, I felt like I was a ticking time bomb with no idea how long I’d have to make memories before I forgot them.”
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.
However, she tells how husband Philip has been ‘her rock’, taking time off work to schedule hospital appointments for Laura and to spend time together.
She said: “It’s so hard for him knowing my condition will only get worse. But he is determined to make the best of our situation so we can embrace the time we have before things become too hard.
In November, they decided to fundraise £2,000 to take a trip to America together.
The couple hope to rent an RV van and drive for several weeks, meet people and have fun.
Laura said: “I want to create memories with Philip while I can, before my ability to take things in is taken from me completely.
“So now we’re racing against the clock, knowing my cognitive functions are likely to get much worse in the next few years.
“We honeymooned in America and I loved it, I’ve always been desperate to go back there and create more memories.
“I have no idea how long I’ll still be able to do that, so we hope to go soon.”
Laura and Philip created a video explaining her condition but she tells how she ‘was feeling quite disoriented and confused at the time’ of filming, so her husband took the lead on speaking.
Laura’s mum Frances made it into a fundraising page on Go Fund Me, and so far, they have raised £1,600.
With any leftover funds, Laura and Philip plan to create a further bucket list to make more memories.
Laura hopes to reach out to other young people with FTD so they can form a support network.
She adds: “Dementia at any age is so isolating but at 38 it’s devastating. I hope my story urges others to get in touch so we can help each other.”
To donate to Laura’s fundraising page, visit: https://www.gofundme.com/laura-frontal-temporal-degeneration-2u9dyay4