Evie’s Story

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Evie was a kind, caring and empathetic 10 year old girl living in Bunbury, WA with her mum Pia, Dad Josh, sister Elsie and her baby brother Sunny. She was a beautiful old soul who felt the emotions of those around her and always wanted to help. She loved music and art and wanted to learn the clarinet (among other instruments). She loved swimming, playing netball and going on adventures with her family. Up until Valentine’s Day 2023 she was happy and healthy and living life to the fullest.

On Monday 6th February 2023 Evie’s mum Pia noticed that Evie’s eyes were making irregular movements, flickering from left to right constantly without Evie being to control it. Obviously feeling concerned, Pia took her to the local hospital where, after waiting for 6 hours to be seen she was dismissed. The doctor on duty performed an eye test where Evie had lost a substantial amount of vision in her left eye which returned a short time later. Pia was told that the symptoms had resolved themselves, but to go and get an MRI if she was worried. The emergency doctor did not provide a referral for an MRI.

On Tuesday 7th February Pia spoke to their family doctor who gave her a referral for an MRI as Pia made it clear that she felt something was happening inside Evies brain that we needed to take a look at urgently. She spent the next couple of days calling various imaging practices to try and book an MRI but nothing was available urgently and was even told it could take 8 weeks.

By Thursday 9th February Evie’s symptoms had worsened and she was now getting frequent nosebleeds, bumping into things and tripping over. Deeply concerned, Pia drove Evie to Perth Children’s Hospital. The staff at PCH took Evie’s symptoms seriously and after rushing Evie through, they performed a thorough investigation and ordered an MRI for the following Monday, the 13th February.

On Tuesday 14th February Pia and her husband Josh received the unbelievable news that was every parent’s worst nightmare. Evie had Diffuse Intrinsic Pontine Glioma (DIPG). An extremely aggressive type of brain tumour, which is incurable, inoperable, and has a 0% survival rate. The average overall survival rate for people with DIPG is around 9 months. This tumour makes its home in an area of the brainstem called the pons, which controls many of the body’s most vital functions.

Evie’s MRI showed the mass was attached to her brain stem which meant it would grow rapidly, eventually squeezing and damaging her healthy brain tissue. Surgery is not an option for patients with DIPG not only due to its location in the brain stem, but also because of its tentacle like growth, it is impossible to remove cleanly without potentially damaging vital brain function.

Evie went on to start daily radiation therapy for 6 weeks in March 2023, and then again in September 2023 to try and shrink the tumour and ease her symptoms which were rapidly increasing. While it was not a cure, it offered some temporary respite. Unfortunately due to the nature of this tumour, Evie’s health and ability to function declined over the next 11 months until her death on the 22nd of January 2024.

A once happy, healthy and fit 10 year old, DIPG slowly took away Evie’s ability to see, hear, walk, move and eat, until she eventually died trapped fully conscious inside her failing body.

There is so much research going into DIPG but our government does not fund nearly enough to make a difference, so we decided to take this into our own hands.

We have had the most amazing support from the beautiful people of this country for our family, and now we reach out once more to help fund real life changes for future children diagnosed with DIPG.

It is unacceptable to think that a child that you have, or that you know, will be diagnosed with this horrendous cancer without having any hope.

Our first big goal for our foundation is to fund a research fellowship for a scientist who will work to create treatments for our kids, so that they might eventually have hope.

The donation would cover the cost to provide salary to a Postdoctoral Research Fellow within the Cancer Signalling Research Group at University of Newcastle.

The Fellow would be an ‘academic’ staff member who has completed a PhD (3-4 years) in their area of expertise, as well as their undergraduate degree.

We aim to take the survival rate for DIPG from 0%, to 1%. And then move up from there!

Evie wanted to be many things in life, all of them in healthcare. So we will make her legacy one that will save the lives of others the same way she would have if she hadn’t suffered with this terrible disease.