A daughter from Edinburgh is taking on a gruelling challenge for her mum who died six days after a heartbreaking motor neurone disease (MND) diagnosis.
On 2 April, Holly Passmore will tackle her first ever Munro by climbing Ben Nevis in memory of her mum, Connie, who died of MND just six days after being diagnosed with the terminal illness.
Marking the fifth anniversary of her mum's passing, Holly from Colinton will be taking on the highest mountain in the UK, with the aim of raising £5,000 for charity MND Scotland.
The tragic mum, who worked in the Scottish travel industry and later became a stay-at-home parent to Holly and Jack 22, died in April 2018, three weeks before her 60th birthday and just six days after she received her MND diagnosis.
MND is a rapidly progressing terminal illness, which stops signals from the brain reaching the muscles. This can cause someone to lose the ability to walk, talk, eat, drink or breathe unaided and the average life expectancy is just 18 months from diagnosis.
Speaking on the first time Connie began showing symptoms of MND, Holly said: “The first big symptom we noticed was in the spring of 2017 when mum began to dramatically lose weight.
“We were going to Pilates at the time, so we thought maybe she was just getting fitter, but then she turned from a plump woman to pretty much skin and bone in a matter of months.”
Without any clear idea of what was causing these issues, Connie’s condition continued to deteriorate as she began to struggle walking, especially upstairs and would become breathless easily.
Holly, who now works for brain health company, Heights, was studying at the University of Strathclyde at the time.
She continued to explain: “It also started to look like she had arthritis in her hands: she couldn’t hold cutlery properly, was dropping drinking glasses when drying them, couldn’t open jars, had shaky handwriting as she found it difficult to grip a pen.”
In August 2017, while on holiday in Greece, the family were shocked when they realised Connie was having difficulty swimming in shallow water, which resulted in panic, with Holly and younger brother, Jack, both racing in to help their mum out of the water.
Connie also had difficulty getting up and out of a sun lounger, and it became apparent that she was gagging every time she had food – something which the family found very strange as she was known for being a keen foodie.
“When we got back to Edinburgh, mum visited a neurologist to do some nerve tests and was then given antibody treatments on three occasions, three months apart. If her symptoms improved between baseline and the final antibody injections, it would rule out MND.”
With there being no simple way to diagnose MND, to protect their children, Connie and husband, John – reluctantly on John’s behalf – decided they would not tell Holly and Jack the specifics of what the testing was for until it became clearer.
Holly said: “My mum had a lot of pride and wanted to do everything she could to protect me and my brother. It was obvious that something was wrong, and me and Jack would discuss what we thought the problem could be, but we never thought it would be MND.”
Having tried to keep life normal for as long as possible, John understandably reached breaking point one day when returning home from his work Christmas party, after a close colleague he’d confided in persuaded him to tell Holly and Jack.
Recalling that extremely difficult evening, Holly said: “Mum was already upstairs in bed, and my dad came home looking really distressed and upset. Knowing something was wrong, Jack and I began to ask him to tell us what was going on.
‘I remember him saying that this was the most difficult thing he had ever had to keep a secret and then he told us that our mum most likely had motor neuron disease.”
Holly continued: “I don’t think either me or Jack had ever heard of MND before then. I can remember my dad asking us if we knew who Stephen Hawking was before explaining that unfortunately, unlike Stephen Hawking who was a rare case that lived for decades, if it was indeed MND, that our mum might not have a lot of time left. We finally understood why she was receiving those antibody tests.”
Sadly, after months of testing, Connie was officially diagnosed with motor neuron disease on Tuesday, March 27 2018.
Reflecting on learning about her mum’s diagnosis, Holly said: “My mum and dad came home and told us the news that it was MND and I remember crying and giving my mum a hug. Even then she still managed to be strong and going off what the doctors had said, we began to mentally prepare for a few years left together.”
Connie had been living with a lingering cough since December 2017 which impacted her breathing and resulted in her receiving some breathing apparatus from doctors to support her sleep. But, 48 hours after receiving her diagnosis, her cough appeared to worsen and she started showing signs of flu-like symptoms.
Holly said: “We took her to the emergency room on Thursday March 29 and it turned out to be pneumonia. After 3 days in hospital, despite showing signs of improvement, mum peacefully passed away in her sleep on Monday April 2, 2018, six days after her official diagnosis.
“The aftermath of my mum passing was horrendous. We all struggled but it hit my dad and aunt Lucy the hardest – my mum’s sister who lives in the States but came across for about a month after my mum passed.
"At the time, I was so focused on supporting my dad and brother that I don’t think I began to grieve until two years later. I was nearing the end of third year of Uni at the time and found my neurobiology class to be extremely triggering.
"I remember reading my textbook chapter and continuously seeing the words “motor neurones” – words that previously would’ve meant nothing to me.”
Now, on what will be the fifth anniversary of Connie’s passing, Holly will climb Ben Nevis with 15 of her closest friends, many of whom she met at primary school and who all have fond memories of Connie, as a warm and nurturing person with a contagious smile and energy.
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Speaking on her challenge, Holly said: “I’m a bit nervous to be honest! I can walk for days on flat ground, but I have never done a Munro before. It’s all a bit intimidating so I’m very glad that I’ll have my friends with me for support.
"Me and some friends recently did the 7 Hills of Edinburgh which was about 22 miles (8 more than it was meant to be…) and great training. I have also set up a walking challenge at work so I’m doing a lot of walking at the moment, all of which I hope will pay off!”
Julie Macdonald, MND Scotland’s head of fundraising, said: “MND is so brutal and fast. That’s why we need to continue fighting to find a cure for this devastating disease. Thanks to supporters like Holly, we are able to continue investing in cutting-edge MND research and provide vital support to people living with the disease in Scotland today.”
You can support Holly by donating here.
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