DIPG - Paediatric Cancer : Sweet "Ashley Maree"

Forever 13. Ashley Maree Annett : 31st January, 2006 - 27th July, 2019

I am asking on behalf of Kristy and Mark, knowing fully what monies they have spent on treatments these past two plus years in the desperate bid to keep Ashley with them and for her to regain her health, sadly she lost her battle after two years, one month and remains "Forever 13" 

Any donation will be greatly appreciated. No amount is too small and all will be gracefully appreciated. 

A beautiful soul has left this world and left a story, one to share, I remember clearly the day Kristy told me she was taking her then 11 year old daughter Ashley to the Optometrist to get some glasses. Ashley had been struggling to see the blackboard clearly, something many parents have done - bought glasses! Sadly for Ashley this simple need turned into an MRI and a shock diagnosis of a rare childhood cancerous tumour that forms in the brain stem. Highly aggressive and ultimately life taking DIPG - Diffuse Intrinsic Pontine Glioma - a tumour located in the pons (middle) of the brain stem the area that controls most of your basic functions: vision, hearing, talking, walking, eating, breathing, heart rate, and more...

A shock diagnosis no parent should ever hear, your child has terminal cancer and we can offer nothing more than Radiation to hopefully “buy some time”, a treatment protocol that has not advanced in any way since Neil Armstrong (first man on the moon) lost his 2 year old daughter Karen to DIPG way back in 1962. How is it that the treatment on offer has not advanced in more than 50 years? 

I wanted to do a GoFundMe then, but out of respect for Ashley's wishes that it be kept as private as possible I did not do so whilst she was here with us. I have asked Kristy's permission to do so now to share a little of what I have known these past two plus years. She and Mark googled like crazy and read all they could of other children who had sadly gone before with DIPG, then chose not to put their precious daughter through the extremely traumatic "treatment" radiation, it in essence was nothing more than palliative care, offering an average life expectancy of 9 months at best. Instead they embarked upon a serious research mission to find a cure for Ashley, this lead to them spending their life savings and when that ran out to taking a second mortgage on their family home. Through their research one neurosurgeon in Sydney stood out - Prof Charlie Teo - An inspirational neurosurgeon, pushing the boundaries to the point where the medical world shunned him, how fortunate for Ashley he was able to operate and remove the bulk of the tumour. This would not have been possible had Ashley received prior radiation on the tumour. This operation and stay in Sydney cost close to $50,000, which Kristy and Mark did not hesitate to pay from their own savings. The only consideration was how fortunate they were to have this available to them, Medicare would not cover any of this, thankfully they had private health insurance to cover hospital fees but the majority of this expense being the fee of Prof Charlie Teo. Again, it was because of not wanting everyone to know how truly sick Ashley was that a GoFundMe was not started, as the focus was on Ashley regaining her health and beating this DIPG that had become the all consuming focus, not on bringing everyone else's awareness to the diagnosis, in order to ask for some financial help to pay for all the tens of thousands of dollars of additional treatments. Just in these past couple of months alone Kristy and Mark took Ashley to both Mexico and USA for treatments and protocols that were not on offer in Australia. This was done at short notice and again the focus was not on the cost, which were significant, but on their beloved daughter’s needs. They knew that if nothing was done she was deteriorating fast.

Now as Kristy, Mark and William and the extended family and friends prepare to farewell their darling daughter and sister whilst reflecting upon a life cut way WAY too short by this cruel, unrelenting, ultimately devastating paediatric brain cancer is it time to ask for some financial help so the loss of Ashley to the family is not leaving a huge financial burden for many years to come, rather to bring awareness to what they and their beloved daughter Ashley had been quietly dealing with on their own.

In Memoriam - Ashley was a bright bubbly young lady who loved her family, enjoyed traveling with them to many places. She enjoyed singing and dance. Drama was a particular passion of hers, earlier on in her diagnosis she was in a lead roll in the Grade 6 school production, to her credit she remembered every word and played her character perfectly, she shone on that stage. She was the centre of attention in all that she did. Sadly over the term of her illness she lost the ability to do so many of the things she loved. She loved to play games on her computer, to make slime and to look after her seven Guinea Pigs and her dog, Castor became her best friend in these past 12 months especially, never leaving her side. Despite all that she endured she rarely complained, and always helped fill the home with fun and laughter.

Thank you in advance for your generosity in easing the painful loss of Ashley and the costs associated with battling to regain her health and keep her with them. Please help with any amount you can, it will all add up, their life moving forward should not be one of financial burden, rather that they have the time to grieve and adjust to a life where I know they will be helping families that face the same diagnosis in the future. Ashley fought hard to stay and stay she did for 2 years and 1 month, not the initial 9 month prognosis given, she would want to know that her life has left a legacy of hope for DIPG kids in the future that the prognosis for them will have a different outcome.. 

Thank you for your generosity.

PS – If you’d like to share a word of comfort with Kristy, Mark and William please leave a message below for them.

#DefeatDIPG #DIPGWarrier #AmazingAshley #Forever13