When Lily Smith lost her mother to Sudden Unexplained Death in Epilepsy, her life was changed forever.
Now two years on, the 10-year-old is using her personal story to help raise awareness for the neurological disorder.
A student at Sacred Heart Catholic Primary School, On Friday during assembly Lily presented Epilepsy Tasmania with a cheque for $3052.
A passionate environmentalist, Lily raised the money by selling more than 160 keep-cups at school – an idea she said was inspired by her father, Shaun Smith.
“When daddy said Epilepsy Tasmania was getting new keep-cups for Father’s Day, I wanted to get involved,” she said.
“I thought that if I could sell a box of each colour, it would raise a lot of money to help people with the condition that mummy had.
“It makes me feel happy knowing I’m helping Tasmanians with epilepsy and helps me to honour my mummy. I think she would be proud of me for doing this.”
Mr Smith said seeing his daughter turn a tragedy into something positive was all he could ask for.
“I know she feels good by helping people and in this particular circumstance, being able to do something positive has been really healing for her,” he said.
“At school, Lily is part of a sustainable Green Team and constantly reminds me of things we can do at home to reduce unnecessary landfill, so fundraising by selling reusable keep-cups was an extra bonus for her.”
SUDEP occurs when a person with epilepsy dies suddenly and prematurely, and no other cause of death is found.
While the risk for an adult with epilepsy is low, at one in 3000 people a year, the risks increases considerably for people with poorly controlled seizures.
Epilepsy Tasmania chief executive Wendy Groot said the money raised by Lily would help provide services and support to the 100,000 Tasmanians living with, or affected by epilepsy.
“One of the most powerful things Lily is doing through her fundraising is sharing her personal story and getting so many more people talking about epilepsy,” she said.
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