Jake de Kort loves speaking about his sister Alana, who passed away one week before her fifteenth birthday. The way she handled her last few days, full of happiness and music and love, was an inspiration, he says.
In October 2017 Alana was diagnosed with Ewing sarcoma. She died on July 28, 2018.
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“When it got close to the end I saw a whole new side of Alana,” he continues. “When she found out she was going to pass away, she just wanted to make the last couple of days so special.”
“In her ICU room she wanted to have music and have the blinds open and write to all of her friends and say goodbye."
"She didn’t want to shut the outside world off. She wanted to enjoy every last minute, and to me that was just so incredible. I'm so proud that Alana was able to do that.”
Since he lost his sister and best friend, the direction of Jake’s life has changed dramatically.
“Don’t sweat the small stuff”
One major change in the life of Jake and his family is the fact that they have learnt to never sweat the small stuff.
“This has become one of my mum’s favourite sayings,” he says. “When you look out at the world, there are so many petty issues that people focus on."
"I want to try to make the biggest impact I can to make life better for as many people as possible so that nobody else has to go through this. I can’t afford to sweat the small stuff.”
How does Jake plan to make an impact? It begins with his career. Jake is in his final year of a double degree of Actuarial Studies and Science, with a major in Pathology.
His strongest belief is that with children’s cancer, early detection is the most important ingredient in the recipe for treatment success. With early diagnosis, he says, therapy options are more numerous, treatment periods are shorter and outcomes are more positive.
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“What does Actuarial Studies have to do with any of this?” he asks. “I’m pursuing the actuarial pathway because I want to develop my knowledge in statistics to really analyse what is happening in the body of someone with cancer.”
“Hopefully from there I can help to develop a tool that can be used for early intervention. That’s one of my big goals.”
Nothing is possible without funding
Having watched the work of Dr Geoff McCowage, Alana’s oncologist and leading children’s cancer researcher, Jake is intensely aware of the need for greater funding for research arounds kids’ cancers.
To become a part of the solution, Jake organised a Guinness World Record attempt as well as a jet-ski trek from Long Reef Beach in Sydney to Agnes Water in Queensland.
Why those specific beaches? It’s a fascinating story, actually.
Rather than a traditional funeral, Alana’s family and friends instead held a celebration of Alana’s life. The event culminated in the throwing of a blue, glass bottle, filled with farewell messages from those who loved her, into the water at Long Reef, on Sydney’s northern beaches.
After an 11-and-a-half month, 1500-kilometre journey, the bottle washed ashore in Agnes Water, exactly 12 months to the day since Alana was given the news that her life was going to end. It was discovered by a woman whose middle name is Alana!
The Agnes Water family made contact after the bottle landed ashore, and the two families have now become close. The jet-ski trip is to follow that bottle’s journey.
And the Guinness World Record attempt? When it's safe to do so, the idea is to get a crowd together to form a giant pineapple image. Pineapples were one of Alana’s favourite things.
“The plan is to do a two-week jet ski trip from Long Reef to Agnes Water and, along the way, stop at ten different locations and have lots of charity and fundraising events. We have a golf day planned, a trivia night, a jet ski ride to Fraser Island and all sorts of other activities,” Jake says.
“We’re also planning on visiting a research laboratory to help publicise the vital work they’re doing and hopefully we’ll also meet some kids in hospitals, or their families who heard our story and are keen to meet us.”
Originally planned for April 2020, prior to the coronavirus shutdowns, the events have now been moved to October 2020 after they attracted overwhelming support.
“For our fundraising body we came up with the name ‘Blue Bottle’, and we think that fits well with the story,” Jake says. “And we wanted to partner with a charity, so we picked The Kids’ Cancer Project because we’re determined to help all we can to improve the funding for scientific research of childhood cancers.”