Hi, I’m Linda. I live in the beautiful village of Malham and
work at Beck Hall, looking after lots of wonderful guests.

When I’m not working, you may well find me jogging across the
Dales training for the London Marathon 2020 to raise awareness of a heart condition that has affected three generations of my family.

This will be my third marathon, and I would love to raise
£1800 for Cardiomyopathy UK and spread awareness of the heart condition that led to the untimely death of my late husband and affects my daughter and my
baby grandson.

In 1996, I ran my first marathon, raising funds for the British Heart Foundation (BHF) following the death of a close friend who suffered a fatal heart attack aged just 30 years old.

Little did I realise that the British Heart Foundation would
become so close to my personal cause as in 1999 my late husband Robert died from sudden cardiac death at the age of 41. 

I was left to raise two young children, Ryan and Olletta,
aged just eight and six years old at the time. 

Since Robert died, his brother and quite a few of his nephews got tested and around three members of the family - all down the male line - came back positive for dilated cardiomyopathy”.

Dilated cardiomyopathy (DCM) is a condition where the heart
chambers become enlarged which effects its ability to pump. The left ventricle of the heart becomes dilated and the muscle wall becomes thinner. This gives the heart a more rounded shape, rather than the normal cone shape.

It is thought that around 30% of DCM has a genetic cause. Where it is genetic, a child of an affected parent will have a 50% chance of inheriting the gene mutation. More rarely, it can be a mutation on the X (female sex) chromosome. It is recommended that children, siblings and parents of the person with DCM are also screened. This usually involves having an echocardiogram and an ECG under the care of a cardiologist. 

If diagnosed, treatment for DCM is available which can control symptoms, reduce complications and lead to improvements in the condition.

The lack of awareness of the condition spurred me to run my second
marathon for the BHF, whilst juggling motherhood with my job at the time as a “postie” for the Royal Mail.  

The kids met me at the finishing line, I wanted them to know
what I’d done and the meaning behind it all.

Meanwhile, Ryan and Olletta were being tested annually for
any signs of DCM, but it wasn’t until 16-year-old Olletta sought further
testing – after her application to join the British Army was rejected on the grounds of her father’s heart condition - that DCM reared its head again.

I’ll never forget that phone call. We were sat at breakfast having a cup of tea and the phone rang, it was the doctor asking Olletta to go
in. I said ‘it’ll be nothing’ and she said ‘will you come with me?’ I remember us joking and giggling away, me saying ‘you’ll do anything to get a day off work’.

We sat there, and the doctor was telling us ‘we’re sorry to
say you’ve inherited your late father’s heart issues, you’ve got dilated cardiomyopathy. We need to give you an MRI and register you at the hospital with a cardiologist’. She was looking at me and I was looking at her, and we just felt like it wasn’t happening.

She was told she would never be able to have a baby and that
she would always be under the hospital’s care. It was life changing.

Olletta was prescribed a three-month course of ACE
inhibitors and beta blockers, but she found the side effects devastating.  

She was exhausted, she couldn’t get out of bed some days.
One morning she got up and said ‘I don’t have to take this medication. I
encouraged her to wait until we’d seen the cardiologist, Paul Smith.

He said ‘if you stop taking your meds then, yes, you’ll feel
better, but your life will become shorter’. Olletta said ‘I’d much rather have a better quality of life than a longer life’. So, she stopped taking the beta blockers and within days was back to her old self.

Among other lifestyle changes, Olletta had been advised to
avoid theme parks and vigorous exercise.

About four-month’s later we took Ryan to Alton Towers and
she took a tongue-in-cheek photo of herself outside the Nemesis and sent it to Doctor Smith. That’s when she said she would do anything she wanted to do, life’s too short and she would enjoy every day of it.

The following year, Olletta met Chris, they married four
years later and longed to start a family together.

That’s when they decided to go down the surrogacy route and
found a surrogate mum, but unfortunately there were two miscarriages which left them both so broken hearted.

Then one day she phoned me and said, ‘me and chris are going
to have our own family, we’re going to give it a go’. I said, ‘don’t be daft,
you can’t be doing things like that’. Typical daughter took no notice and
before we knew it, she was pregnant.”

Against all odds, baby Lucas Robert, named after his
grandad, was born on March 8th 2019, weighing 4lb.

In spite of numerous, detailed scans of Lucas’s heart during
pregnancy and no signs of DCM at birth, a routine test at five months old revealed heart failure caused by the condition, which is now being managed by medication and regular checks up at Great Ormond Street Hospital.

Looking at Lucas melts my heart because you would never
know, he’s just a beautiful bouncy 10-month-old. He’s trying to crawl, puts everything in his mouth, chewing on everything, teething and just being amazing. Olletta is doing cracking and is an absolutely fabulous mum, she gets tired, but we all do.

No one tells you about these conditions, no one pushes you to get things checked out, see a doctor, get a blood test. It’s very easy to
think ‘I haven’t got time’ or ‘I’m ok’.

Cardiomyopathy UK is registered charity that aims to improve
the lives of the thousands of people living with cardiomyopathy and depends on donations to provide its vital services, please help me to raise money for cardiomyopathy UK and awareness of this condition by donating on my JustGiving Page.

Thank you so much for reading my story and any donations would be very gratefully received.

Linda xxx