Please support my 86km challenge to help kids with cancer!

I am running 86km to support my Daughter Effie

87km
Conquered for
kids with cancer

86km
My distance
target

My Activity Tracking

87
kms

My target 86 kms

Please help find a cure for the deadly DMG/DIPIG

You can follow Effie's story on IG @Flowers_For_Effie

www.instagram.com/flowers_for_effie/

I am taking part in the 86k for a Cure and dedicating my efforts to my 4 year old daughter Effie who is currently fighting Diffuse Midline Glioma (DMG) and dedicating the funds raised by Effie’s team to Levi’s Project who are dedicated to raising funds for research and clinical trials for children with DMG/DIPG. I want to pay it forward to the next family who is faced with this horrible disease. Our team is OPEN so if this story resonates with you and you would like to join our team we would love to have you. If you feel you can give up something this month to donate then please do so through the link to this page or through my page.

On every run I will be picking a flower for Effie and posting it @Flowers_For_Effie on social media with the link to this page and I encourage you to do the same, even if you don't join the team.

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 29^th 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.

You can find their story here @levisproject

www.instagram.com/levisproject/

Please support me to help give Effie and all kids diagnosed with DMG/DIPG as many Christmases as we possibly can. We have set up an IG account so we can support Effie and raise awareness about DMG in children. If you can’t donate then simply share this page and our Instagram page is all that I ask.

You can find her story here @Flowers_For_Effie

www.instagram.com/flowers_for_effie/

Thanks for reading.

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Top Donors

1 Effie and Safa donated $3,020

2 Figgy donated $2,020

3 Pedemonts Match donated $2,000

My Achievements

My Updates

Flowers For Effie

Thursday 14th Mar

Hi All

First of thank you for your support by either donating or joining the Flowers For Effie team, the team is coming in 3rd place on the leader board! The team has done much better than I ever expected so thank you.

When we set the target we wantedto make sure it was achievable and reached that target in a few days! I've decided to lift the target to see if we can cover the cost for one child being enrolled in the Levi's Catch trial, a rough break down is below.

$10k to enrol each patient into Levi's Catch trial
$15k for the 3 CSF tests per infusion to measure CAR-T cells
$5k per infusion to check the general health of CSF

On top of this there are MRI scans, anesthetics, medications and hospital stays to name a few, but the above costs are specific to the trial.

So the new target is $30k, let's see if we can get there!

Dom

Thank you to my Sponsors

$150

Anonymous

$1.11k

Luke And Kate Barlow

Good Friday gathering ran and walked 202 Km's. Distance covered by Dom, Ryan and Luke for March, 342.1 Km's. $2 per Km doesn't seem much but its just like your running, Small steps can make a big difference. You guys are amazing and always in our thoughts and prayers. Big hugs to you and your family.

$1.8k

Thyra Community Hub

Well down Dom and all supporting! Go team 💜

$263.75

Rinaldi’s

$63.30

Anonymous

$62.70

Norto

Great work Domma & Effie

$1.02k

Gia & Ada

$261.25

Skip & Jarvie

Great work Dom!

$63.30

Lizzy, Sam, Mila And Nieko

Big love to you all, Gardens 🌸🌻🪻🌼🪷

$109.72

Moozie And Jean Van Niekerk

Lots of love to you all!! You’re all amazing!!! Jean and Moozie

$52.75

Kate Redfearn

$42.20

Lisa Charlton

$263.75

Penny,ross,ruby And Poppy

What an incredible team . You guys are amazing . 💕💕💕Sending all our love . 💕💕💕

$2.02k

Figgy

Sending love from Albury. X

$26.38

Pedemonts Match

We’re proud to support your challenge to help kids with cancer.

$26.38

Elizabeth Hateley

$201

Pedemonts Match

We’re proud to support your challenge to help kids with cancer.

$201

Two Billy Buttons

$50

Pedemonts Match

We’re proud to support your challenge to help kids with cancer.

$50

Denae Henderson

$261.25

Pedemonts Match

We’re proud to support your challenge to help kids with cancer.

$261.25

Trav And Katy

❤️

$10.55

Pedemonts Match

We’re proud to support your challenge to help kids with cancer.

$10.55

Bree

$20.90

Pedemonts Match

We’re proud to support your challenge to help kids with cancer.

$20.90

Jasper Rose

Found your story on instagram, thank you for sharing. Sending all the love 💗🎀

$2k

Pedemonts Match

We’re proud to support your challenge to help kids with cancer.

$151

Pedemonts Match

We’re proud to support your challenge to help kids with cancer.

$151

Anonymous

$1,000

Pedemonts Match

We’re proud to support your challenge to help kids with cancer.

$3.02k

Effie And Safa

$520

Andrea, Ryan, Abi, Bella Vagg

We all missing you all and think of you all the time, can’t wait to see you soon

$42.20

Anonymous

$1.02k

Penni & Tim Douglas-garden

Run Dom Run

$110.78

Kate

Your little girls are both beautiful. Hoping Effie’s treatment keeps working.

$110.78

Ross Berryman

$52.75

Kylie Atley

Good luck on the walk Dom sending you & your family strength & love

$110.78

Dan Casey

$1,000

Bourne Family

$63

Doug And Steph

Keep on fighting! We’re all with you!

$21.10

Lucy Kovacevic

Sending love and strength.

$156.75

Georgi Kellock

Awesome work team Garden! Thinking of our dear friend Effie often. Your strength to get this done, share your story and advocate whilst you all face this incredibly tough journey, is so very inspiring. Big hugs and lots of love from Georgi, Mark and Gracie xx

$40.18

Elsie, Joni & Bonnie

The girls raised this money with their mates at school, always thinking of you all and sending our love x

$21.10

Ashlee Vernon

$52.75

Kaz

Sorry to see what Effie and your family are going through. All my best wishes your way.

$110.78

Maartje Jansen

$10.55

Anonymous

$105.50

Emma & Toby Taylor

$520

Brickworks Match

We’re proud to support your challenge to help kids with cancer.

$520

Danni Falconer

🩵🩵

$316.50

Alison Bourne

$316.50

Brickworks Match

We’re proud to support your challenge to help kids with cancer.

$21.10

Brickworks Match

We’re proud to support your challenge to help kids with cancer.

$21.10

Mckenzie Donnelly

I wish i couldn’t donate more but i hope things only go up for your beautiful family and it brings so much more awareness around this disease and can one day find a cure

$20.90