Sue Mulcahy

Supporting Flowers for Effie

I am taking part in 86K for a Cure to help find a cure for childhood cancer.

Every month, 86 children are diagnosed with cancer. 

I have joined the Flowers for Effie team to support our very dear friends Dom and Rosie whose 4 year old daughter Effie has been diagnosed with Diffuse Midline Glioma (DMG).  The Flowers for Effie team are dedicating the funds raised to Levi’s Project who are dedicated to raising funds for research and clinical trials for children with DMG/DIPG.

Dom and Rosie and their two beautiful girls have spent less than three weeks at their home since Effie’s devastating diagnosis 6 months ago.

Here is a little of their journey as described by Dom …

Effie was diagnosed on the 10/09/23 with a tumour in her brain; 8 days later and after 3 brain surgeries her neurosurgeon delivered the most devastating news that there was no known cure for Effie's disease, surgery was not an option. Our world came crashing down.

We were told that she has a DMG in her right thalamus; this is a rare and very aggressive tumour that is generally not diagnosed until it is at stage 4. In Australia, the only registered treatment for DMG is radiation therapy; Effie took that path as it has the highest chance of increasing life expectancy, although there was a 20% chance her tumour wouldn’t respond at all. If radiation therapy was unsuccessful, Effie would not have made it to the Christmas of 2023, if it was successful, the average life expectancy is a mere 9 months.

Thankfully for Effie, radiation therapy went as well as it could and gave Effie some much deserved extra time. We are using that time to create as many fun memories as possible and have chosen to enroll her into a clinical trial that is 800kms from home. The pressure of choosing the right path forward is enormous, if a trial takes 3 months to get through the first stage, that may be 30% of her remaining time. Being far from home means reduced time with friends and family.

In Australia, 26 kids are diagnosed every year and this disease is known for behaving differently in each child making it an extremely complex disease to draw conclusions from research, let alone effectively treating the disease. What is effective for one child isn't necessarily effective for another, however, worldwide there are a large number of trials being undertaken, all aimed at giving these kids a fighting chance.

Thankfully, Effie has been given the opportunity to be enrolled into a CAR-T cell trial here in Sydney Children’s Hospital at Randwick, right next door to CCIA. She is just the second child to be treated here with this ground breaking technology. Basically, part of Effie’s immune system has been modified to target and kill the tumour cells in her brain. Effie has undergone her first infusion of CAR-T cells and we have just received the results back on the 29th of February 2024. Incredibly we have seen a 30% reduction in the size of her tumour over the 7 week period she has been in the trial, obviously we are over the moon with this news. She still has a long road ahead as this last scan shows a new unidentified mass in a different location in her midline, the unpredictability of this disease leaves you with little control of your life.

The CAR-T cell therapy trial has been funded and set up by Levi’s Project.  Levi’s Project was started and is run by a family who sadly lost their little Levi all too soon to DIPG, a fate that Effie is also facing. They have made it their life’s work to raise funds and direct them into research and clinical trials here in Australia so families have another option and do not necessarily need to travel abroad. Our family is very grateful for the fundraising work that Levi’s Project has achieved in raising $4.6M over the past years, which is why the Flowers For Effie team is dedicating their 86k in March to Levi’s Project through the CCIA.

Please DONATE NOW and support my challenge to change the lives of kids with cancer.