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Memories in May

Throughout May, which is Brain Cancer Awareness Month, we shared images and stories of children and families affected by DIPG. We want to thank these families for allowing us the honour of sharing these incredibly special stories and moments, and their trust in us to use the images of their children as part of our #MemoriesInMay campaign.

Eloise’s Story

Our friends Simon and Georgie Katich wanted to share their family story about their very special niece Eloise Laidley Luke (2/04/13 – 15/01/15)
“Seven years ago we lost our precious niece Eloise as she lived the last few hours of her little toddler life, cruelly taken from us at age 20 months in the most brutal unfair fashion by a DIPG tumour. The time between diagnosis and death was just one month.
“We have seen darkness and light since that day, worked to move forward and comprehend the pain that is so deep it almost paralysed us. Our hearts are forever broken but stuck back together with the love we have received.
“Love, Simon and Georgie Katich.”
Simon has kindly offered to be an ambassador for RUN DIPG and promote the need for research into childhood brain cancer, and we have gratefully accepted.

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

Recently we had DIPG awareness day. Diffuse intrinsic pontine glioma (DIPG) is a highly aggressive brain tumour which is very difficult to treat.
One of our SAP Under 11 Boys Max, lost one of his best mates Zane West to DIPG.
“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.”
(Written by Max)

Ahlia’s Story

by Katie Williams  

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

May marks Brain Cancer Awareness Month. This May also marks 11 months since we lost our beautiful little girl. Evie was a kind, loving, wickedly funny, generous and cheeky 9 year old when she was diagnosed with DMG (part of the DIPG family). She fought for 5.5 months with courage, grace and wisdom far beyond her years. She leaves a huge whole in our lives, deeper and more painful than we could ever, ever have imagined.
Evie would want us to advocate and raise awareness of the monster that is DIPG/DMG to help improve outcomes and so that it does not remain the death sentence we know.
We also think of all the beautiful children that have lost their lives to this and the families so tragically impacted. We hope with awareness there brings much needed funding into research to find answers and eventually beat this monster.

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

I’ve always hated the month of May. My birthday is in May. When I was very little, my grandmother died around my birthday. When I was 25 my dad died days before my birthday.
May is the last month before winter, when the weather starts to get really cold, bitter and miserable.
Mother’s Day is in May, a day to celebrate my beautiful children, but the day is incredibly difficult as it also reveals a gapping hole, that one of my children is absent.
Since Annabelle was diagnosed with brain cancer, I also found out May is brain cancer awareness month with DIPG awareness day on the 17th of May. This year, we are trying to create global awareness of DIPG.
It would mean so much to me if you could use this photo to change your profile picture to Annabelle this May to honour and remember Annabelle and to help spread awareness of this insidious disease.

Tori’s Story

Today St Joseph’s supported the Run DIPG Memories in May Awareness Day. We participated in sporting activities and were fortunate to have Mrs Binnie speak to us about Run DIPG. Thank you to all the families who have donated on QKR.

Talin’s Story

1 May·
So, time moves on, people grow up and life moves in that terminal direction that is death and new frontiers of existence…
You kinda never know what will turn up and that is part of the surprise in life…
Charlotte turned up as I was moving though the crowd at Relay for Life…
She was in Year 2 when Talin was at school with Mrs Condon, and though not in his class, she remembered his bright smile and passion, being a beautiful young child…
So of course I was in tears, and explained on how the Worldwide resources that have been created in his name., the effects on clinical trials using his cell line, the two people seeing out of his eyes and the saving of Bear Cottage due to awareness and grants…
No, Charlotte is not standing on a box…
I should be… smiles…
Charlotte is the first to wear Talin’s Cape apart from me…
She was immensely proud of the moment and her connection to my little boy…
People grow up and live lives…
I would hope that Charlotte is a Wonderful example…
Miss you to the Stars and back Talin…
Plus a little bit more…
Love always…
Dad…
Yeah, I am probably tiney…
Ok… Ok… I am…

Ashley’s Story

Ashley is our beautiful, spirited, bright, bubbly, humorous, creative, adventurous, determined, fun loving daughter. She lost her fight with DIPG in July 2019. For two years and one month she battled. We always refused to give up hope that we would rise to the challenge and come out on top. But it just wasn’t to be.
Our Ashley. She lived life on her terms. Full of spunk and determination, there was never a dull moment with Ashley around. She loved singing and dancing, making slime, collections (Squinkees, Shopkins, Littlest Pet Shops, Pop Vinyl’s, Pusheen), laughter, the trampoline, netball, making friends, holidays, going out and most of all caring for animals in every way possible. She adored our dog Castor and was negotiating getting another dog right up until the time she passed away. She had a tribe of seven guinea pigs, who are still cared for by our family to this day. She wanted to be a vet or work for the RSPCA when she grew up.
Ashley was always so much fun to be around and the centre of attention and our family.
My mini me, my baby girl child, I still can’t believe you’re gone. This life will never be the same without you. I will always love you to the moon and beyond. Forever 13.
Ashley Maree Annett 31-01-2006 to forever xx

Ivy’s Story

On 21st June 2021 I picked Ivy (then 6) and her big sister Ellsie (then 😎 up from school after her spending the week with at their dad’s. As soon as I saw Ivy I noticed that her left eye was inverted, on questioning I found that nothing significant had occured while she was away to cause this so made the assumption that she needed glasses. I took her to the optometrist the following day and glasses were prescribed.
After Ivy’s glasses arrived, they made no difference at all, infact Ivy had begun tripping over more frequently and bumping into walls on occasion.
On 18th July, Ivy was lethargic and began vomiting. She was taken to the Gold Coast University Hospital ED where they did a CT scan. The scan results showed that Ivy had a brain tumour – something that we least expected to hear!
That’s same afternoon Ivy was rushed to Queensland children’s Hospital for emergency surgery to put in a drain to relieve the pressure around her brain from hydrocephalus and 2 days later on 20th July we got the results from Ivy’s MRI- we were told that she had a Diffuse Intrisic Pontine Glioma- otherwise known as DIPG. We were informed that most children succumb to this disease between 9-12months and that we should start making lifelong memories with Ivy.
Ivy underwent 30 radiation sessions over 6 weeks, she responded well to the radiotherapy, infact at her next MRI in October it showed that the tumour had shrunk by almost 50%.
By mid December, Ivy’s health had begun to decline and she was beginning to have difficulty moving her right arm and leg, on Xmas day I noticed that Ivy was having trouble swallowing by January Ivy had no movement in her right hand side at all and had to mobilise using a 4 prong walking stick and then in the following week, by wheelchair. In February Ivy had another MRI which showed that the tumour had increased in size and was now larger than at diagnosis, Ivy’s speech was impacted and in the weeks following she began to experience severe lumbar pain caused by the tumour spreading down her spine.
When Ivy’s pain became too severe to manage at home, we transferred to Hummingbird House- Queensland’s only children’s hospice where we remained until Ivy passed away on March 26th, 23 days after her 7th birthday, 8 months and 5 days after we found out that she had this terrible disease.
DIPG/DMG has a 0% chance of survival and is the worst form of any cancer, particularly childhood cancer. Unfortunately because this is such a rare cancer, there still isn’t enough research into finding better treatment that will give children and families more time together with a fighting chance of survival and hopefully in the future a cure.
Please share Ivy’s story and #memoriesinmay to raise more awareness and to get to word out.
RUN DIPG is a charity dedicated to improving outcomes for patients and their families impacted by the deadliest form of childhood cancer – the brainstem cancer, diffuse intrinsic pontine glioma (DIPG) also known as diffuse midline glioma (DMG). It is our mission to raise awareness of this disease, and to generate funding to support the advancement of DIPG/DMG research.
With no treatment options currently available, except palliative radiotherapy, we advocate for the timely and innovative development of anti-DIPG/DMG therapies, and, improvement to current standard-of-care management.