

Throughout May, which is Brain Cancer Awareness Month, we pay tribute to the children, families and communities devastated by DIPG by sharing their photos and stories. We want to thank these families for choosing RUN DIPG to honour their memory. #MemoriesInMay
United with these families we believe research is the answer to stem the growing number of memories in May.

Eloise’s Story

Liberty’s Story
It’s DIPG/DMG Awareness Day. Are you aware? We are. It stole Liberty’s speech, swallowing, and all movement but left her completely cognitively aware of everything happening to her, tortured her to death for the following nearly four months, and then stole her permanently.
Are you aware of Liberty’s story? It’s the extreme side of DIPG, but even “normal” DIPG is the deadliest type of cancer globally, the leading killer of children by cancer, and also affects adults of any age. Are you aware that it’s not really rare and kills at least 4,000 children and an unknown amount of adults each year? That it’s terminal on diagnosis, with a less than 1% survival rate? Are you aware that most kids live less than 9 months after diagnosis? That it’s had the same single treatment option since the 1960’s?
Be aware. Spread awareness for Liberty and all the past, present, and future children and adults that will be killed by DIPG/DMG.

Zane’s Story
“From the first day Zane started at my school we became great mates. We both loved soccer, riding our bikes around the neighbourhood between our houses until it got dark. We loved that we lived so close to each other and spent most afternoons together. Zane and I always had so much fun! When Zane got diagnosed with DIPG it made me feel really sad and it’s not fair that there is not a cure. I miss Zane everyday and that’s why I want to help raise awareness about DIPG so that we can find a cure.”

Ahlia’s Story
Ahlia Jane Williams entered this world in the early hours of Monday 11th June 2013. She grew into a thoughtful, funny and determined young girl with a thirst for knowledge. She was a kind, caring and enthusiastic old soul with those lucky enough to be in her presence knowing the positive impact her energy had on this world.
Just one week after Ahlia’s seventh birthday she came home from school upset, complaining of not being able to see the blackboard in her class properly. Two days later she attended an optometrist appointment, where we were told she needed glasses due to a condition called esotropia. Her glasses were ordered (much to Ahlia’s delight), however over the next couple of days, her left eye started to slightly turn inwards, which rang alarm bells. On Wednesday the 24th of June 2020, we visited Ahlia’s GP, who sent us to the emergency ophthalmologist in Bunbury. From here we were encouraged to attend the local hospital for Ahlia to receive a MRI to rule out other possible causes. That afternoon we returned to the Ophthalmologist who voiced the diagnosis of our worst nightmare, ‘Your daughter has a brain tumour. You need to drive to Perth Children’s hospital immediately.’
After two long days and nights at PCH, away from Ahlia’s youngest brother whom she adores, we were given the diagnosis we were by no means prepared for. ‘Your daughter has Diffuse Intrinsic Pontine Glioma (DIPG)’. This is incurable, a ‘go home and make memories’ diagnosis. Ahlia was given 12-18 months, with palliative radiation her only option. This only to buy more time for the memories we were told to go home and create.
Ahlia sadly passed on Sunday, the 29th of November 2020, less than six months post-diagnosis.
This month we are joining forces with RUN DIPG in a campaign called #MemoriesinMay. Families impacted will share their stories to highlight the global hopelessness of a DIPG diagnosis in hope that we receive global response, making May 17th ‘DIPG Awareness Day’ internationally. As Matt and Phoebe (the founders of RUN DIPG) have said; A chorus of motivated voices can change the world.
Ahlia was destined to have a positive impact on this world, and although she is no longer physically here on earth, we will use her story to help create a world with the hope that one day there will be a cure to the deadliest form of childhood cancer. A world that we forever dream existed in 2020. Please share our story and change your profile pic to our gorgeous angel for the month of May, so our children’s legacy can promote global response and recognition. Together we can #MoveTowardsACure
Ahlia Jane Williams, forever seven in heaven.

Evie’s Story

Lucy’s Story
Thanks to everyone for your donations to our 2 recent fundraisers for DIPG. Lucys Laughs – her little Joke Book – raised a total of $1161. We’ve still got plenty more of Lucys Joke Books and will organise another fundraiser soon. And our other fundraiser, Lucys Legacy, has wrapped up for now and added to the Joke Book proceeds, you’ve helped us raise a grand total of $16,922.
You’ve all amazed and moved us with your generous contributions to help find a cure for this terrible brain cancer. There’s a long way to go and Nicole and I will continue to raise awareness with many other events and initiatives to come so please stay tuned for that. Don’t forget it’s Memories in May as part of RUN DIPG, so please feel free to upload Lucys digital badge as your profile picture for the month with the hashtag #memoriesinmay Thankyou and we love you all

Annabelle’s Story

Tori’s Story
DIPG or Diffuse Intrinsic Pontine Glioma is an aggressive, cancerous brain tumour that develops in a part of the brainstem and is inoperable the only option available is radiation to prolong life.
Our brave girl was diagnosed on the 26th of September 2018 at the young age of 3. Tori, Aaron, and I headed to the Ronald McDonald House in Randwick to start her 30 days of radiation. Every day our little girl had to go under a general anaesthetic, which meant no food or water until she was done with her radiation. We lived in Sydney during the week and got to go home every Friday to visit with her brother Harrison and Alexander. Once radiation was done we found out that the radiation did not shrink Tori’s tumour.
At this time the only trial we were offered was ACT001. While Tori was on ACT001 she slowly lost her ability to walk and was declining in health. Aaron, Tori’s dad had flown to Germany to purchase a trial drug that was not yet in Australia ONC201. We started Tori on the ONC201 and started seeing an oncologist in Newcastle. Slowly Tori started walking again, to say the least it was a miracle. My little girl was walking, talking, cooking, and doing arts and crafts.
Tori’s tumour eventually started to grow slowly. At the end of October 2020 Tori lost her ability to walk again. She slowly over the weeks lost her mobility in her left arm. We eventually put in a feeding tube in November to help with food and medication. On December 12, 2020 Tori had a really big throw up and we believe at this time she had a brain bleed. Her brother’s came to read her favourite books, hold her hands and say goodbye. Aaron and I held our brave girl till her last breath. Tori was and will always be the bravest girl I have ever known. She is missed by her whole family beyond belief.
RUN DIPG is an Australian Charity dedicated to improving outcomes for patients and their families impacted by DIPG. With no current treatment options, we will continue support RUN DIPG in moving towards a cure.
#teamtori
#foreverfive

Talin’s Story

Ashley’s Story
Ashley was always so much fun to be around and the centre of attention and our family.
