Published: 12:58, 14 May 2021
| Updated: 17:21, 14 May 2021
A teenager has described the 'crippling pain' which hit him after both of his parents died, and how he lived a 'robotic double life' in a bid to cope.
Jeremy Daubeny from Tunbridge Wells, lost his dad, Giles to a brain tumour and just seven months later his mum Clare, died of motor neurone disease (MND).
But on Monday, he plans to hit the road for seven weeks in search of Britain’s best breakfast while he raises funds for The MND Association and The Brain Tumour Charity as a fitting challenge in his parents' honour.
In September 2018, Jeremy’s dad, Giles, who had worked as an actor and an artist, lost his life to a glioblastoma brain tumour, aged 59. Then, in May 2019, his mum, Clare, died at the age of 56.
She had been diagnosed just two years earlier.
All of this happened as Mr Daubeny progressed through his teenage years. Although he completed his education at Bethany School in Goudhurst and will head to Exeter University this year to study politics and economics, circumstances meant things were far from straightforward.
He said: “I managed to function because, when I was at school, I did sort of live a double life.
“At school, I was okay. At home, I did struggle a lot more.
“In the end, I did come tumbling down, living like that.
“School was, in many ways, a beautiful distraction. I did really enjoy school and I enjoyed learning, and there were good friends about.
“But I wouldn’t necessarily chat about my parents’ conditions.”
The devastating loss of both parents made Mr Daubeny determined to fundraise in their memory and his newly-discovered lockdown hobby, cycling, provided the perfect inspiration.
"In the end, I did come tumbling down, living like that..."
Starting on Monday, he will leave Tunbridge Wells and venture as far south as Southampton.
From there, he plans to go to Bristol and head over the Severn Bridge into Wales.
He then hopes to gradually head north-east, before reaching Scotland. He's already had more than £10,000 pledged, smashing the initial goal of £2,500.
After Jeremy’s dad lost his battle, his mum fought her illness and the family supported her at their home on Sutherland Road. A close friend to Clare, Catherine, a nurse, even gave up her job to support the family while Jeremy’s sister, Jess, deferred university plans.
“Me and my dad have always had such a brilliant relationship,” said Mr Daubeny.
“We spent so much time together.
“Football was a real common language we had. We were Brighton fans and we went to as many games as possible.
“Losing him was pretty crippling, really. I didn’t really know who to turn to.
“Having my mum at home - and she was still unwell - I decided to be a bit robotic, as opposed to getting in touch with my grief.
“I went to school, did my best at home and sort of lived a double life in order to not get completely crippled by everything. In the past 18 months, I have realised that is completely unsustainable.”
"I didn't really know who to turn to..."
In terms of what symptoms he first spotted with his dad, he said: “Funnily enough, it was a complete parallel of my mum.
“With either MND or a brain tumour, you start to lose your ability to operate one half of your body. With my mum, I think it was her left hand and, for my dad, it was his right-side of his body.
“He couldn’t move his right arm and his right leg was slightly odd.
“It was more behavioural changes in terms of him acting quite irrationally, though, because he was my mum’s primary carer at the time. Those irrational acts.... We thought they were stress.
“But when his body started to shut down, we realised that we probably needed to get some help for this.”
The first symptoms suggesting Clare, a former nurse, had MND became apparent when she attempted to do a masseuse course exam.
Mr Daubeny said: “When the exam came, she noticed she had started to lose the ability to move her fingers in the way a masseuse needed to. When she did, it was really painful.
“Initially, the doctors put it down to a trapped nerve.
“This came in the year before she was diagnosed. Then, in April 2017, she was diagnosed with motor neurone disease.
“Her balance, quickly, became worse. Her speech began to slur.
"It has definitely matured me in some aspects of life..."
“One side of the body was slowly travelling to the other side and, eventually, her whole body shut down.”
Mr Daubeny accepts he has had to grow up a lot quicker than his peers.
He said: “It has definitely matured me in some aspects of life. At the time, I certainly saw it as quite unnecessary maturity.
“I could see really great sadness and great distress, but I couldn’t buy a bottle of wine. I felt out of proportion.”
The challenge will help him to keep his parents in his thoughts, as does speaking about them.
“I’m always talking about them. I’m always remembering their characters,” he said.
“A lot of my parents’ friends and me and Jess’ friends have been really good at staying in touch. They are always reaching out to us.
“We are always talking about them. There is not a day goes by where someone doesn’t say ‘Your dad was brilliant at this’ or ‘Your mum was such a lovely person’.
“So, constantly, we are talking in conservation about them with people that knew them well. It is a lovely way to hold them both in our memories.”
While he samples breakfasts on his tour of Britain, his parents won't be far from his thoughts.
“My dad was one of those rare people who had the ability to sit outside a café and chat away to strangers for hours on end. He was never in a rush and just loved being surrounded by different characters.
“Something I crave every day is to have one more bite to eat with my dad and watch the world go by while we chat about anything and everything. I guess every time I sit down for a breakfast on this challenge, my dad will be firmly at the forefront of my mind.”
He added: “They both were very unique characters. My dad was a helluva of a character.
“He had a big booming voice, he wore extravagant clothing and he played the ukulele in public. He was not a typical guy.
“My mum was the most caring person I know, my dad was just completely himself.
“That is something I try to carry into every day and I’m so inspired by.”
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