Tucked away deceptively under a takeaway café on the corner of Gilmore Road in Queanbeyan’s…
This autumn why not get involved in a cause that will lift your spirits—and your heart rate?
The annual nation-wide Cupid’s Undie Run has been lifting both in support of kids living with tumours for many years now and despite COVID restrictions cancelling what promised to be another amazing year of fundraising and fun, the run will still be going ahead in a new virtual form.
From 14-28 February, get your mates together and complete Cupid’s Challenges and raise money for The Children’s Tumor Foundation (CTF), which provides services to children living with tumours such as Jess.
Today, we’re sharing Jess and her mother Carey’s story in the hope of inspiring Canberrans to get together, pop on some red undies and raise money for this great cause.
While Canberran Carey Russell was giving birth to her daughter Jess—Carey was diagnosed with Neurofibromatosis (NF1).
As a new mum, Carey had to quickly learn what this diagnosis meant and discovered she had a 50% chance of passing it on to her children. She felt a deep sense of guilt when Jess started forming café au lait birthmarks all over as this indicated her daughter had inherited the condition.
Receiving a diagnosis as an adult gave Carey a false sense of what living with NF was like. Carey was happy, healthy with some birthmarks and lumps that only appeared during her pregnancy, otherwise, she was unaffected by the genetic disorder.
While NF impacts each person differently, Jess, unfortunately, didn’t inherit her mother’s lack of symptoms. Jess was four years old when she was diagnosed with an optic glioma; a type of tumour that is common in NF1 and grows on the optic nerve.
Carey tried not to worry because she knew of other children with this type of tumour that only experienced mild symptoms. Carey lived in this sense of denial until Jess’ next MRI. The day they got the results, their world came crashing down.
The initial optic glioma had double in size in just 12 months, and a second optic glioma had formed on her other optic nerve which was causing her vision to deteriorate drastically.
Jess had just turned five years old when she was given the prognosis. Carey also discovered Jess was experiencing colour blindness caused by a compressed nerve on her right side, meaning she could no longer see properly out of that eye.
The only option for treatment to address the tumours was chemotherapy. Carey soon realised that monitoring bloods, going to the hospital and revolving their lives around chemotherapy cycles was going to be their new normal.
To make matters worse—Jess has been receiving her chemotherapy treatment during COVID, which has meant Jess isn’t allowed to leave her room or her ward and all of the children’s services that are usually used to preoccupy and entertain kids in the oncology ward have been closed down. The loss of a support network has broken the family more than once.
At this stage, Carey is unsure if Jess will get her eyesight back or if it has been permanently affected by her tumours. If the chemo doesn’t work, Jess’ best chance will be access to drug trials like the TinT MEK Inhibitor clinical trial, which thankfully, the Children’s Tumour Foundation have helped fund.
There are no other treatment options. This is life with NF.
Jess’s family are active members of the Children’s Tumour Foundation (CTF) and their annual Cupid’s Undie Run. While NF can lead to feelings of social isolation, anxiety and depression—Cupid’s Undie Run encourages participants to run around in their undies to raise funds and shine a light on this devastating condition.
For Jess’s Full Story, click here.
How to get involved?
The Cupid’s Undie Run Challenge 2021 runs from February 14-28 2021. To get involved, it’s easy. Repeat after me—I take my pants off for charity!
You can even purchase the official Cupid’s branded undies from cupidsundierun.com.au/store to show your support.
Anybody can show their support or register to take part in the national activities at cupidsundierun.com.au