This Saturday, May 6th, Nigell Lee will run solo in the gruelling Margaret River Ultra Marathon to raise much-needed awareness for epilepsy.
The race begins at Hamelin Bay and concludes at Howard Park Winery in Wilyabrup, taking the 1,500 competitors on an extensive 80km journey along the spectacular Cape to Cape coastline.
For Lee, running began as a health and wellness quest and has become a way of making a difference. “For me, I was going to do this anyway, but I wanted to do it for a cause,” he said.
Lee’s desire to raise funds and awareness for Epilepsy WA comes from watching his godson, Harry Minutillo, struggle with a severe type of epilepsy, Dravet syndrome, from as young as seven months.
Dravet syndrome is a lifelong condition that begins in infancy. Seizures for those with this specific type of epilepsy are often frequent, prolonged, and difficult to control. Alongside this syndrome comes behavioural and developmental delays, such as language and speech issues, sleeping difficulty, and chronic infections.
We spoke with Harry’s mum, Carly Minutillo, who shared the challenges and hardships their family has faced over the past four years to get Harry the treatments and assistance he not only requires but deserves. “For Harry, he’s in and out of hospital constantly; it’s thousands of dollars a month”, said Minutillo.
For not only the family but for all of those living with this disease, it’s important people realise the severity of epilepsy. It isn’t just one occasional seizure and then everything’s okay. “For my son, he had a seizure [where] he actually lost the use of the left side of his body. It’s taken us two years to get it back,” said Minutillo.
In Australia — and Western Australia, in particular — a large majority of people are unaware of the seriousness and prevalence of epilepsy. 1 in 25 Australians will be diagnosed with epilepsy at some point in their life, yet it remains in the shadows and unspoken about.
Western Australia is the only state in the country with no recurrent government funding for those living with the disease.
Epilepsy WA CEO, Emma Buitendag, spoke to us about the complexity of epilepsy. She informed us that there are 40 different types of seizures and that 1 in 10 people will have a seizure in their lifetime.
“Some seizures can appear like the person’s daydreaming. Other seizure types can cause the person to appear like they are under the influence of illicit substances or alcohol,” said Buitendang.
Like many diseases, epilepsy comes with side effects. 1 in 2 people who struggle with epilepsy will experience symptoms of depression in their lifetime. For parents of children with epilepsy, Buitendag said that “1 in 4 may experience PTSD. Epilepsy contributes to 0.7% (179,830) of all deaths in Australia.”
This year Epilepsy WA will celebrate its 60th year of raising awareness and assisting individuals and families throughout the Western Australian community.
To donate directly to Nigell’s fundraiser, click here.
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