Jemima was a regular teenager; until all of a sudden, she wasn’t…
You see, you can’t have a heroine, without an extraordinary tragedy — and DIPG is just that.
Jemima was “surprised to be shoulder tapped” on 11 February 2021. She went from “healthy as a horse” to pretty sick. In her case, pretty sick was dire and deteriorating by the hour.
Once stabilised and diagnosed by MRI and stereotactic biopsy in Christchurch Hospital; we were forced to climb the DIPG mountain together. A harrowing journey where the end is a fait accompli, but we woke up each day; even in the knowing of the diagnosis, to make the most of it; and laugh, and get out there, and hustle and live — because this enemy doesn’t sleep.
While hurtling down the other side of the ‘inoperable’, ‘incurable’ and ‘untreatable’ mountain, Jemima did something amazing.
A supernova, burning at its brightest — she made a wish to be part of a cure so other kids wouldn’t have to face the terminal diagnosis of DIPG in the future.
Jem raised $696,420 through her Give A Little campaign, and donated the funds, along with her brain tumour, tissue and brain stem to Dr. Matt Dun in Newcastle, Australia. She hoped that her contributions would lead to a treatment pathway and eventually a cure to DIPG.
Welcome to Jemima’s Wish.
A note from me: Ray. I’m Jemima’s Mum, trustee of Jemima’s Wish and author of this website.
Jemima was an amazing teenager who didn’t deserve this. None of the kids who get DIPG do.
Today, in the aftermath — I’m in grief and residual shock and a near equal measure of pride and pure admiration for what my girl achieved with extraordinary odds stacked against her.
What an honour it was to meet the soul of my daughter — all human ego dissolved. Evolved and golden for 8 months on earth. What an inspirational woman she became.
What a heartache I’m left with to have lost her.
Not if, but when you hear my hurt, slightly sarcastic, momentarily furious, sometimes vulnerable voice come through in my writing — please know, I’m OK with being all these fragile things, all at once. It just is. I accept it to be a result of walking through this absolutely senseless fucking fire called DIPG.
Anything in double quotation marks is from, or said by Jemima, as close to verbatim as my memory allows. They’re her words. I’ve included them because her voice is active in the work we continue in her stead.
This site is centred around our personal experience with Jemima and her particular case of DIPG. To be clear, it’s a sample size of ONE. We are her parents; not doctors, or people of medicine or science. While I felt like I became an armchair oncologist this year, I concede calling myself that title is an insult to doctors. But also acknowledge there is an enormous amount of parental hustling for (experimental and desperately needed) treatments for most kids with DIPG.
In the absence of an effective standard of care, the advice to ‘go home and make memories’ (actual words said by doctors at diagnosis) is inadequate on all levels, and of equal insult to parents.
I generally refuse to use stock photography for all the reasons. I’d rather profile Jem’s cat, Pumpkin (@pumk1nator) than a ubiquitous stack of medical papers with a stethoscope draped over them. Please, enough with that.
The medical descriptions and terms in this website I’ve borrowed from reputable sources and minced into new paragraphs for SEO purposes while retaining the facts.
At this point, it would seem natural to invite you to enjoy the site. But I’m not sure DIPG can be that sort of story. Enjoy Jemima’s Incredible Journey instead — as best coined by Piera McArthur; ‘as she leaps into the radiance of her new glory’. Ray x