Help Evie Whipps through her DIPG journey

Evie is 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 is a beautiful old soul who feels the emotions of those around her and always wants to help. She loves music and art and wants to learn the clarinet (among other instruments). She loves swimming, playing netball and going on adventures with her family. Up until Valentine's Day this year 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 it was nystagmus and that the symptoms had resolved themselves, but to go and get an MRI if she was worried. They 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. Pia spent the next day or so calling various imaging practices to try and book an MRI but nothing was available. By Thursday 9th February Evie’s symptoms had worsened and she was now getting frequent nosebleeds, bumping into things and tripping over. Deeply concerned by now Pia drove Evie to Perth Children’s Hospital in Perth. The staff at PCH took Evie’s symptoms seriously and after a thorough investigation, ordered an MRI for the following Monday, the 13th February.

On Tuesday 14th February Pia and her husband Josh received news that is every parent’s worst nightmare. Evie has Diffuse Intrinsic Pontine Glioma (DIPG). This is an extremely aggressive type of brain tumour, which due to the level of aggressiveness and the ability of it to invade neighbouring tissues, is considered an incurable, inoperable brain tumour that has a 0% survival rate. The average overall survival rate for people with DIPG is less than a year. 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 shows the mass is attached to her brain stem that will grow rapidly, eventually squeezing and damaging her healthy brain tissue. Surgery is not an option for patients with DIPG due to its location in the brain stem. Evie went on to start daily radiation therapy for 6 weeks to try and shrink the tumour and ease her symptoms. While it is not a cure, it offered some temporary respite. Unfortunately due to the nature of this tumour, Evie’s health and ability to function will decline and this awful cancer will take her from us long before she is due.

No family can be prepared for such a diagnosis and Pia and Josh’s lives have been turned upside down. For the coming months Pia and Josh, as well as Evie’s little brother and sister will be living near the children’s hospital while Evie receives medical care to keep her comfortable and start a hopefully life extending clinical trial.

As Josh is the sole provider for his household this means that there has been no income, and unfortunately the bills never stop coming.

We are asking for financial support to enable this amazing family to stay together and spend every single moment together and not miss a thing. Our hope is that Evie’s family can enjoy every second of time they have without the added burden of financial stress.

In the end, time is all we really have.

Our darling Evie and her loving family, we all love you so very much and we will wrap you in our arms and carry you through this.