Bek’s Story
photograph of Bek painting by Damjan Janevski, Star Weekly
Community & Creativity
From an early age, Bek had always loved Lego, colouring and making things. This continued throughout her short life, leading to her career as a graphic artist. She created websites for her day job and had many side hustles, including creating logos, menus for restaurants and vectorizing art for a guy who restored vintage arcade games. Bek was a vibrant, active 26 year old who enjoyed life to the full.
In her artistic practice, Bek painted huge murals down to tiny pieces. She loved creating with her laser cutter, 3D printer and resin printer, and worked through ideas in various mediums including photography and textiles.
Bek was an active member of the Melbourne arts community, regularly taking part in exhibitions and arts markets, and loved talking to people about her arts, including young children. In her spare time, she designed and made her own clothes.
As well as her artistic side, Bek loved riding her motorcycle and off road car racing with her dad, playing board and video games with her family and spending time with her friends. She loved her partner of ten years and her two cats.
A beautiful Soul
Although all parents say their children are the best, Bek was truly a beautiful, kind soul who cared about everyone around her. She would spend a day in Melbourne city seeding artworks for others to find and enjoy. She had all the time in the world for children, hoping to brighten their day and encourage their creativity.
Birthday Celebration
Bek celebrated her 26th birthday at home with us and our extended family – it was a fantastic day, just like Christmas. A house full of people, eating, playing video games, hanging out and riding dirt bikes in the backyard. Laughter inside and outside the house.
Final Days
Two days later, Bek felt ill, she thought that she had caught a cold. She went to the doctor and took time off work to rest. A few days later she was back at the clinic where the doctor put her on a drip to get fluids into her. That night, she texted us to say that she was feeling a bit better, but wouldn’t visit over the weekend, she wanted to rest and get rid of the bug she had caught. Two hours later, she was in an ambulance going to hospital. She had had a seizure and not regained consciousness.
Our Response to NORSE
After losing our beautiful 26 year old daughter, Bek, to NORSE in 2023, we decided that no other family should have to endure the three weeks of hell, that culminated in the loss of her life. It could not all be for nothing.
Steve’s training in noise and vibration saw him recognizing similar signal signatures in Bek’s EEG monitor. Steve wanted to know if noise cancelling technology could be used in some way to reverse the signal that her brain was giving out. No one could answer this question. Steve has since been in contact with the people that make the vagus nerve stimulator to ask the same question – again, it was not something that they had thought about. Since Steve has been reading research papers, he has found that there are people looking into this vein of thinking.
Alison had been working on a new book, which had been put to one side. After Bek’s passing, she thought that we could finish and publish the book and donate the profit from sales to NORSE research. The embroidery book would have a limited print run of 1500 copies and be promoted as a fundraiser for NORSE, to both raise funds and awareness of the condition at the same time.
With the help of Nora Wong, we were put in contact with Michael Fong, Neurologist/ Epileptologist from Sydney’s Westmead Hospital. Michael worked with The Epilepsy Society of Australia (ESA) to set up a GoFundMe page for NORSE research in memory of Bek. This fund, the first set up by the ESA specifically for NORSE, will be used to support those working in the field of NORSE research.
We promote both the ESA GoFundMe page and our book in an effort to maximize the amount of awareness and funds that we can generate. We mainly use Facebook and Instagram, along with Alison’s business newsletter to spread the word.
The book, A Kaleidoscope of Goldwork Butterflies, is a project based embroidery book and was released in September, 2024 with two thirds of the print run being sold in less than a year.
If you would like to purchase a copy of the book, it is available from Alison’s website here.
If you would like to donate to the ESA GoFundMe page directly:
