Simone Venner will never forget the day her beloved father was diagnosed with motor neurone disease.
“I was sitting in the living room of our home in Cutenhoe Road and the sun was shining through the window,” she recalls. “My parents had just returned from the hospital after months of tests. Mum came in and cried on my knee. Dad was pacing up and down with his hands on his head. At that point he had a noticeable slur but nothing else.
“Mum said: ‘It’s motor neurone disease.’” The words were foreign to most doctors then, let alone a 20-year-old girl. Simone says: “I asked what that meant and she replied with her eyes full of tears: ‘One to five years.’
“I said ‘What can we do?’ And that’s where my interest in nutrition and holistic healing started.”
The former South Luton High School student, who studied at the Pineapple Performing Art School in Covent Garden, was working in Thailand at the time. She had her own hairdressing business and sang in clubs at night.
But her dad’s diagnosis sent her into a downward spiral. “We’d always had a really close relationship and suddenly my childhood dream of being walked down the aisle by my father had been taken away from me.
“I remember thinking I’d never be happy again. It was tough for all of us and my way of dealing with the darkness was to was to spend hours and hours online researching his illness.
“Eventually I found what I was looking for – a connection between mercury in the body and neurological conditions. The doctors treating Dad thought I was a quack. But that’s where my health journey began.” Simone cleaned up her diet and lifestyle and decided to go back to school. She enrolled at a college in Vancouver that specialised in holistic nutrition and qualified as a Registered Holistic Nutritionist.
She says: “I now have more energy, sleep better and feel stronger. And I regularly send my parents health tips and supplements.
“They have seen my change and I think it’s good for them too. I remind myself daily of what I have – a father who’s still in my life, who fights each and every day to be here. And even though he doesn’t have a voice, he’s still active in his own way, writing stories and poetry.
“He’s almost doubled his expected time living with MND and we are all very proud of him. My parents love my brother and I very much and my mother stays strong as my father’s carer.”
Simone wants to reach out to people in similar circumstances, who have a family member with MND. She says: “Sometimes it’s good to talk and know you are not alone.”