Liam McNally
The mother of a Melton artist who died last year from a rare illness plans to reproduce her daughter’s works as embroidery designs that will be sold to raise money for researching the condition.
A few days after her 26th birthday in May, Rebekah Cole had her first ever seizure and lost consciousness, which she never regained.
She was taken by ambulance to the ICU at Sunshine Hospital, then Royal Melbourne Hospital where she was put into a coma.
The following three weeks, Rebekah had thousands of seizures and was treated with every medication and treatment that was known to help until her body gave up.
Her mother, Alison Cole, was told Rebekah was diagnosed with New Onset Refractory Status Epilepticus (NORSE).
NORSE is a clinical presentation in which healthy people are suddenly struck by prolonged seizures that do not respond to at least two anti-seizure drugs and do not have a clear structural, toxic or metabolic cause.
Ms Cole said NORSE is such a rare condition that RMH had only seen a handful of cases over a number of years.
“We were told that Bek had the worst case that they had ever seen,” she said. “This rare condition takes about a dozen lives each year worldwide.”
Now, Ms Cole is turning to fundraising in the hope that in the future other families won’t have to experience what hers has.
Ms Cole is involving her daughter’s love for art in the fundraising and is in the early stages of turning some of Rebekah’s artworks into embroidery designs that will be sold to raise funds and awareness for the NORSE Institute.
She is also working on a book due to be released later this year, and will donate 50 per cent of the cover charge to the institute.
“I have to think that some good has to come out of the hell that we have all been through in the past months,” she said.
“Bek was a vibrant, active, young artist who was loved by everyone that met her. She had a strong work ethic and love to help people.
“Her face lit up talking to both adults and children at the market stalls where she sold her art. She lived life to the max and never wasted a minute.”
Details: www.norseinstitute.org/
