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. 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. I have asked Kristy's permission to do so now to share a little of what I have known these past two plus 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. How is it that the treatment on offer has not advanced in more than 50 years? 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.Ī 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. ![]() 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. No amount is too small and all will be gracefully appreciated.Ī 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. 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"Īny donation will be greatly appreciated. ![]() Ashley Maree Annett : 31st January, 2006 - 27th July, 2019
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