If I could for just a moment, ask you all to close your eyes and imagine. Imagine that you are in a bed or a wheelchair, or in hospital and you can’t move one of your arms or legs or both, you can no longer feed or dress yourself, you can no longer see properly, you are having trouble talking if you can still at all, you can no longer eat like everyone else your food is either liquefied or mush. You can no longer bath or wash yourself, you can no longer go to the toilet on your own, you need a catheter.
Imagine that you realise that even though you have been told for months that it’s ok, we aren’t giving up yet, but you know that your different. Imagine that you are trying to talk but you mouth won’t allow it. Imagine that you lose all of your physical capabilities except for your mind. It is still alive, and still knows and hears everything going on around you. Imagine feeling so scared and angry and frustrated that your body won’t do what you are asking it to, you want help, you want it to stop, you want to scream and cry all at once. Your scared. Your trapped in a body that has failed you.
Imagine having to ask if you are going to die, and will you go to heaven. What is heaven like.
That is one of the deadliest Paediatric Brain Tumours called DIPG(Diffuse Intrinsic Pontine Glioma). This is the killer that eventually took my son Cooper’s life at 6 years old.
I watched Cooper, as he lost all the parts that made him who he is, slowly bit by bit. I try to recall the last day I heard his voice for the last time. When was the last time I heard his laugh, or say Mummy, I love you? When was the last time that he could hug me? I mean really tightly squish the life out of you deep love hug.
Cooper was 4 years old when we were told on the 31st October 2014, that he had an inoperable brain tumour called DIPG (Diffuse Intrinsic Pontine Glioma). DIPG, is classified as one of the most, rarest forms of paediatric brain cancers located in the brainstem, at the base of the brain. DIPG is usually diagnosed in children aged 5 to 10 years. The median survival rate for this rare paediatric Brain Cancer is 9-12 months. Cooper fought a courageous battle for 21 months, passing away, at the age of 6 years, on the 25th July 2015.
Brain cancer kills more children than any other disease, and kills more people under 40 in Australia than any other cancer - yet it receives less than 5% of government cancer research funding.
Like us, many people are unaware of this deadly Cancer called DIPG. Many would be even more shocked to learn that one of America's most famous astronauts, Neil Armstrong, the first man on the moon on July 20, 1969, who famously said "That's one small step for man, one giant leap for mankind" embarked on that historical Apollo 11 mission only four months after his 3-year-old daughter Karen "Muffy" died from DIPG on 28 January 1962.
Today when a child like our Cooper is diagnosed with DIPG, they are treated with the exact same treatment as those children diagnosed back in 1962!
We as an evolving human race, were able to put the greatest minds in our lifetime, to work together and be able to send a man to the moon because the powers to be wanted to achieve something great, and something never done before. I believe that we too, could accomplish the same results, if we were able to collectively fight this together. Funding is vital if we want to accelerate our goal of achieving results, in the future of researching a cure for brain tumours and the number one illness resulting in death of our children.
This is unacceptable, that still after 54 years, many missions and men on the moon, like us many parents still have to hearth words "No known Cure" "Inoperable" "Terminal".
Starting now, this has to stop. We need to find a cure.
It's up to us, to you, to act now, today, and be a part of greatness.
Our children, husbands, wives, mothers, fathers, brothers, sisters, grandparents and friends are more than just a statistic.
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