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Those who know our family, know us as an AFL and rugby family, however those who truly knew Coop, also knew he was a passionate foundation supporter of the Melbourne Storm.

Cooper never wavered in his passion for the Storm, and loved nothing more than a spirited game of League – so long as his beloved Storm came out on top.

When the generous offer came from the NRL to host an intimate, invitation only Chairman’s dinner for 50 guests, it represented a superb opportunity to raise awareness and funding for sarcoma, whilst celebrating the game Cooper had come to love since he was a small boy. 

After my first meeting at NRL HQ, I was simply in awe of the lengths all those I met, were willing to go to in order to assist CRBF in optimising this opportunity. 

 The can-do attitude filters from the top down at the NRL, and there is a culture which I found overwhelmingly refreshing.  Each person I dealt with was truly accommodating, helpful and understanding.  My requests were numerous, and I was never at any stage made to feel an annoyance, when each of these people were juggling the rigours of finals – their busiest and most intense time of the year.

 Then there were the ‘Legends of League’.  One can be forgiven for feeling a little apprehensive when dealing with an illustrious group of sportsmen, who represented some of the best players this sport has produced.   

The absence of the often- present sense of entitlement which can accompany sportsmen of this stature, was a breath of fresh air.  Wayne Pearce, Steve Roach, Steve Edge, Brad Fittler, Michael Ennis, Anthony Minichiello, Braith Anasta, and Daly Cherry-Evans dined and engaged with our guests, in an effortless manner.  Each volunteered their time, and their highly entertaining stories, and in doing so, thoroughly endeared themselves to those who spent time with them.  I suspect I will continue to field emails from our high profile corporate attendees for some time, extending their thanks to each of these legends of the game of rugby league.

It is of note, the media has been littered with less than flattering commentary and images relating to Rugby League over past months, and it is nigh on impossible to find a newspaper article, or television coverage, that does not focus on the negative.  As such, it is disappointing to note the media was unable to cover this event, and to broadcast the infinite positives rugby league brings to the community as a whole. This event was but one shining example of  eight outstanding legends of the sport, quietly, and without fanfare, willingly giving their time to raise money for a cancer that has by and large been forgotten, and statistically, is unlikely to ever affect them or their families.  There was no hidden agenda, but instead a willingness to place their ‘celebrity’ behind the cause.

 Thanks to the generosity of the NRL and these outstanding legends of the game, we are today $33,000 closer to finding a cure for sarcoma,(and climbing daily), and in doing so, the sport of rugby league has provided untold hope for those young patients who walk this road behind Cooper.

 Your kindness, and your willingness to shine the light on sarcoma will never be forgotten…

Walkley Award winning ABC journalist and producer, Lesley Robinson has worked in current affairs for more than fifteen years, working for the ABC Foreign Correspondent, ABC News and Australia Television, before joining the 7.30 Report.  This year Lesley put yet another jewel in the crown at the ABC by adding her highly successful style of journalism to the Four Corners team.

Lesley lovingly and respectfully produced Cooper’s story which was aired on the 7.30 Report on January 15 this year, and had spent an enormous amount of time with him filming him for the proposed story.  Cooper had so much time for Lesley.  He saw her as a serious journalist, and one who could reliably portray the perils of a sarcoma patient, but he also saw her as a very genuine and kind woman, and a devoted mother – someone he could trust.  Coop was happy to have Lesley and her crew to film him doing what he loved over a period of many months.

Lesley became very close to Coop, and understood him well.  He in return, forged a strong bond with her, and allowed her to see the raw reality behind the diagnosis, something he did not do with many.  Lesley became very special to Coop and to our family over the months prior to his passing, and afterwards.

Three weeks ago, I was alerted by a third party, to the distressing fact, the precious, and largely unseen footage of Cooper had gone missing.

This footage bore the closing months of Cooper’s life, at a time when he was still happy, upbeat, and hell-bent on conquering his condition.  We were not yet to the point where our family were able to watch this footage, however we were comforted by the fact the ABC had made the decision to give it to us, when they were under no legal obligation to do so.

After the year that has been for our family, this was indeed the final straw.  The past three weeks have been simply heart breaking, as we exhausted all avenues in an attempt to locate these files, and in doing so, being met by obstacle after obstacle. It did feel at times like the most bitter of blows after losing Coop.  There were days where it felt very hard to breath as we contemplated the extent and gravity of this situation.

As Coop declined, we would never allow any cameras, ours or others, around him.  He despised his decline, and it was not something that we felt, should ever be captured.  The footage taken just weeks prior to this however, showed a very different young man, facing his challenges in the same fashion as he had for eighteen long months.

Last night, out of sheer desperation, I contacted Lesley, who I had not wanted to bother with this issue.  As a producer, Lesley is not expected to keep rushes (raw footage) whilst filming a story, so I felt it may cause her angst to be made aware of the situation.  She responded in a very timely manner to tell me she felt there may be hope, as she often keeps copies of ‘important or precious’ footage.  At 6.53 last night I received a message from Lesley saying she had the files.

There are simply no words that can express the extent and depth of our gratitude to Lesley.

Suffice to say we will never be able to adequately thank her for returning these precious memories to us…

Mama Cax (Cacsmy Brutus) is a Haitian born model , advocate, blogger and motivational speaker, based in New York who holds a BA and and MA in international studies.  At 28 these achievements alone are impressive by anyone’s standards, and her life at first glance, seems to be complete.

But it is not just her stellar professional career that sees this stunning young woman stand apart from others, Cax as she likes to be called, has faced unimaginable adversity in her 28 years. Diagnosed with osteosarcoma which had metastasised to her lungs, and at the tender age of 14, the fight of her life began.

Cax early life was near perfect, in the idealic surrounds of her home in Haiti. Then in a blink of an eye, this all changed when constant pain in her hip was, after many visits to her doctor, finally diagnosed as osteosarcoma. Like most sarcoma patients, the diagnosis simply marked the beginning of a journey that most people would struggle to comprehend.

An intensive neoadjuvant chemotherapy protocol for twelve months was followed by an invasive twelve hour hip replacement to remove the tumour from the bone, together with a metal implant, which Cax’ body rejected, proved to be unsuccessful. The result was an amputation of her right leg, together with half of her pelvic bone. Keeping in mind all along Cax was the tender age of 16. When I was 16 the biggest issue I faced was what to wear, or how to avoid homework, and I am sure I am not alone.

The toll was indescribable and understandably, severe body image issues began to manifest, as the standard prosthesis that was fitted did not look real, and the reality of the magnitude of surgery set in. This is something rarely considered by those on the outside looking in. If you have your life, then to the outside world – you are deemed one of the fortunate ones. For those living this nightmare, it is yet another bitter blow.

Cax sourced an online community who identified with her concerns, she found Alleles, a company who made “fashionable, beautiful prosthetic covers”, and the shift in her self confidence began. During this time, Cax began her now highly successful Instagram account ‘Mama Cax’ which currently has 141,000 followers, to share her journey of ‘self love’.

By living by her mantra, she was able to “encourage others to feel less insecure and more empowered in theirs.” Adding, “I no longer feel disgusted looking at my scars. I now see them for what they are: proof that I survived, that I’m still here, and against all odds, won a vicious battle with cancer, and that’s nothing to be ashamed of.”

Cax, through sheer courage, determination and resolve, has turned the unthinkable, into a vehicle in which she guides and inspires others that walk behind her. She is a highly successful blogger, who is a disability advocate who has earned the right through her experience, to speak about positive body image.

For those of us who have lived this nightmare that is sarcoma, either as a patient or the loved one of a patient, we thank this inspiring, beautiful young woman for all she has done and is doing for those without a voice.