“It’s Dad’s idiosyncrasies I miss most – his sturdy but quiet presence in every room, the way he gritted his teeth when there was a cute animal nearby, his fervent sharing of whatever impressed him – elongated car chases in over-the-top action films, song lyrics, speeches, articles, comedy that made him laugh until he cried, everything Tim Minchin,” MasterChef judge Sofia Levin says movingly of her beloved father, Greg, who tragically passed away on July 8, 2024 from motor neurone disease (MND).
“And I miss calling him at least once a day with a pointless question, though it was never really about finding an answer.”
Greg, a doctor, photographer and father-of-three, was diagnosed with MND in January 2022.
MND is a neurodegenerative disease that affects the motor neurones. Over the short course of his illness, Greg lost the use of his arms and upper body, his ability to walk, swallow, eat, talk and eventually breathe.
SOFIA LEVIN’S HEARTBREAK
Despite enduring unimaginable challenges, Sofia, 35, and her dad, who died at age 65, 30 months after his diagnosis, refused to let the disease take more from him that it already had, celebrating his lifelong passion for photography with an exhibition called Grounded for MND that fundraised for MND Victoria.
Almost a year after his death, MND Victoria ambassador Sofia is still raising awareness of the disease.
“It’s an unimaginably cruel and incurable disease with an average lifespan of two years from diagnosis, and it’s increasing in frequency. Every day, two Australians are diagnosed with the disease
and another two die from it. In Victoria the number of people living with MND has risen from 400 to 550 in the last seven years, while nationally it’s gone from 2100 to 2688 people.
“The need for a cure aside, MND is rarely spoken about compared with many other illnesses, yet it arguably requires the most physical, financial and emotional support,” says the MasterChef judge, who adds that MND Victoria was a huge support for her family.
“The support was limitless. You can’t underestimate how much you need someone to hold your hand when a family receives a diagnosis of motor neurone disease – and I say family because no one can manage MND on their own.
“Caring for someone with MND is well beyond a full-time job, but it is also an impossible task – regardless of how well you develop a routine, it will
change weekly as the person’s body and abilities waste away. Regardless of how much you love someone, they will die.
I remain in awe of how my mum cared for dad, how he swallowed every skerrick of pride to let her, and how they still laughed, every single day.”
HONOURING GREG
As for how the family will remember Greg on the anniversary of his death, Sofia says, “I can safely speak for the family when I say that we remember him every day, in almost everything we do. More formally, dad’s consecration ceremony is just before his anniversary. In death as in life, dad will be surrounded by our nearest and dearest.”
In her dad’s memoir, Glass Half Full, Greg wrote that although he didn’t believe in heaven, he believed his “family and friends” were “heaven” for him. “He was our heaven, too,” Sofia has shared.
“Losing Dad has cemented what I have felt my whole life – that, up until his diagnosis, we really were the luckiest family. Never has that felt truer than without him here. In some twisted way that I’d rather not be privy to, it’s also taught me how resilient I am, and that there is joy and lightness to be found no matter what life throws at you.
“We never left anything unsaid as a family, so my advice to others is cram as much into this one life as you can with the people you love.”
To find out more about how you can support MND Victoria, visit mnd.org.au
