Hi All!

I am taking part in Australia's most stunning Marathon - The Great Ocean Road Marathon!

I have decided to take part in this run in memory of one of the bravest and inspirational little boys I had the pleasure of meeting and continue his plight to raise awareness of Diffuse Intrinsic Pontine Glioma (DIPG).  At the same time trying to make a real difference by raising money for a charity called The Isabella and Marcus Paediatric Brainstem Tumour Fund.

So what made me finally decide to sign-up and run 44km and why have I chosen this charity to support?

A marathon has always been on my ‘bucket list’ to do, for the last 5 or so years I would punch the GOR Marathon into my Outlook calendar and then slowly watch the date drift by for yet another year. Although this year was a little different and it wasn’t until a good mate of mine actually asked me why I had decided to do a marathon that it actually sunk in.

Sure I had it on my life’s bucket list of things to do, but this year I realised I had a little bit of extra inspiration and also a new sense of appreciation for life and just how short and precious it can be.

An old primary school friend of mines little boy, by the name of Jaxon Cooper was that extra inspiration. Jaxon was like any 10-year-old boy - fun loving, energetic, boisterous and a lover of all sports, with big dreams to become an NBA basketballer.

In February 2014 however Jaxon was diagnosed with a cancerous brain tumour known as Diffuse Intrinsic Pontine Glioma (DIPG).  

‘Brain tumours are now the leading cause of cancer deaths in children in Australia and DIPG is the most dangerous and least understood.

This type of tumour occurs in the brainstem, most frequently in children between the ages of 5 and 9 and offers no prospect of long term survival. Most children die within a year of diagnosis.

Research has improved the prognosis of many children’s cancers but there has been no progress in the treatment of DIPG in the last 30 years. The only treatment available is radiotherapy, which prolongs life by months if the tumour is responsive.

The Isabella and Marcus foundation was a huge help to Jaxon and his family throughout their journey and the foundations mission is to fund and establish research laboratories in Australia that will seek to understand the cause of DIPG and develop novel treatments for testing in clinical trials.’ - (http://www.isabellaandmarcusfund.org.au/)

Unfortunately, due to the type of tumour and the current treatments available, Jaxon lost his courageous fight to 'kick cancers arse' and passed away late in 2015. But not before achieving numerous amazing bucket list goals and along the way touching many people’s hearts with his courageous fighting spirit and extremely positive outlook on life.

I remember reading on his Facebook page ‘Jaxon’s Journey’ setup at the time he was diagnosed that he was asked to make a ‘bucket list’ of his own. Typical of Jaxon’s attitude his list included some pretty big ticket items which he ticked off his list; he trained with the Collingwood football team, travelled to the USA to watch his favourite NBA team the New York Knicks then met all the players after the game and he even walked his mum down the aisle on his mum and dads wedding day.

But one of his biggest and most selfless bucket list dreams was to raise awareness and help find a cure for DIPG so as other kids and families didn’t have to go through the same experience. At only age 10 he even managed to arrange a meeting with the Australian Prime Minister at the time, Tony Abbott, to tell him how he really felt about the lack of funding and awareness that was being put into DIPG research by the Australian Government.

So in memory of this amazing little dude and to help continue his passionate plight of raising awareness about this disease that effects so many young children, I will be sweating it out and pushing myself to make the distance along the iconic Great Ocean Road on May 15, 2016.

Please help to continue Jaxon’s dream to raise awareness and to find a cure for DIPG, and also supporting me through this challenge by making a generous donation to my page and The Isabella and Marcus Paediatric Brainstem Tumour Fund

Every little bit helps so PLEASE DONATE NOW by pressing donate.

Thanks for your support and feel free to come down to the event to help encourage me across the finish line!

Cheers

Luke T Kelly