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Marko's Smile - Help Marko Beat Neuroblastoma

$130,554 of $350,000 goal

Raised by 978 people in 5 months
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Marko is our youngest baby of three. He has the most precious smile and gentle, caring personality. Unfortunately, in the two short years of his life he's already endured more than most of us would in our lifetime.

Following almost six weeks of persistent tummy problems and a further couple of weeks of invasive tests, in April 2018, at only 16 months of age, we received devastating news that Marko had neuroblastoma. Although  a relatively rare form of cancer, neuroblastoma is one of the most common malignant tumours in children under the age of five.

Initially, Marko's tumour was classified as a low risk, localized neuroblastoma. The large tumour size of an orange was removed from his little body at the Royal Children's Hospital in Melbourne and we were reassured that he was cured - past clinical evidence indicated that children with this type of neuroblastoma have a 98% survival rate. The only complication advised at the time was the slight chance that the tumour may regrow, in which case it would be removed again with no serious implications for Marko's future development.

The whole family felt relieved and eternally blessed to receive such positive news after several months of the most gut wrenching thoughts and expectations of the worst. As Marko was slowly recovering, my husband and I returned to work, our three boys to school and daycare and life was getting back to normal. The whole experience, although horrifying, also provided us with an opportunity to do some extensive soul searching, gave us a new perspective on life and the values that shape us and made us much stronger as individuals and as a family too.

But this newly found bliss would not last long. In October 2018, Marko started to limp and developed a fever. As the symptoms persisted, we took him to the emergency department at Royal Children's again, where he was diagnosed with septic arthritis of his right hip. He underwent surgery to wash out the joint and was put on a 8 week course of antibiotics. During the course of this treatment, he was seen by his Oncologist who once again reassured us that Marko was cured from neuroblastoma and that this episode was purely coincidental.

Regrettably, the specialists were wrong. Marko's fever and limp never fully subsided, and following yet another admission to ED, orthopaedic surgeons ordered an urgent MRI, followed by a CT scan a day after. To the ultimate surprise of everyone involved, the scans showed that Marko had developed another tumour at the primary site in his left abdomen, 10cm in diameter which had infiltrated his left kidney. There were multiple tumours in his pelvis, the long bones of his legs and potential spinal involvement too. Bone marrow and testicular biopsies confirmed that these organs had been affected by metastases too. Marko now has Stage 4 High Risk neuroblastoma. With the most advanced type of treatment available in Australia children facing this diagnosis only have a 40-50% 5-year survival rate. Should Marko survive this treatment, there is still a high chance he would relapse, at which point the majority of patients are considered terminal.

Luckily, there is hope!

Following extensive research of various clinical trials available across the globe and consultation with other families going through a similar ordeal, we were made aware of a therapy available at Memorial Sloan Kettering hospital in New York, USA. The trial is led by Dr Brian Kushner, a renowned paediatric oncologist who specializes in neuroblastoma treatment. The Phase 1 trial of this therapy has shown extremely positive results to date, and it seems that this opportunity is the best hope available in the world at the moment to give Marko another chance in life.

Unfortunately, this treatment does not come cheap. As international patients, it is estimated that we would need approximately AU$350,000 to make this treatment available to Marko - this is money we do not have even if we sold all our possessions. This amount is needed to cover medical expenses as well as a year of having to live in New York for the duration of the trial, or make multiple trips back and forth. Should this eventuate, Marko and I will travel to NY alone once he finishes frontline treatment, and my husband will stay behind in Melbourne with the two older boys so that he does not lose his job and the kids continue their education.

We are absolutely devastated at the thought of not being able to provide our youngest baby with every possible option to extend his life and give him an opportunity to grow up and make his mark in the world. We are raising our kids to be selfless, to show positive values in their every action and believe that the main purpose of life is to make this world a better place for everyone.

Please, please, please help us ensure that Marko gets this chance to achieve his full potential! No matter what the outcome of this journey is, our family will endeavour that our every action be directed towards giving back to the wonderful community that has shown so much love, strength and compassion to make one little boy smile again.

Any unused funds will be donated to charity to help further research into finding a cure for this terrible disease.

With our heartfelt gratitude,

The Magic family

https://www.facebook.com/markosmile/


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We’ve spent a lovely few days back at home, the boys really missed Marko and our normal family time.

Unfortunately, the idyll did not last very long, as Marko started to limp again. We hope to have some scans booked this coming week to see what is happening, however we are well aware of what this might mean. We’ll have to switch off from our phones and social media for some time to be able to support Marko and his brothers through another series of tests and hospital admissions, but will keep you in the loop.

Thank you for keeping Marko and our family in your thoughts and prayers through these challenging times ❤️
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https://primer.com.au/crowdfunding-ethical-dilemma-jelena-and-marko/

Several weeks ago I gave an interview for Primer, a stylish women’s magazine which covers a wide range of interesting topics - from fashion and beauty to current affairs and contemporary social issues.

I really like how Sharon Bradley presented Marko’s story. It is being told in the broader context of the complex and often ethically fraught world of crowdfunding, which so many families with rare diseases have to enter to provide their loved ones with the best opportunity to survive.

It is a really well-written and interesting article, please read and share to raise awareness of this important issue. I truly hope it instigates some positive change ❤️
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23 days in hospital and Marko is finally feeling better!!!

It’s been a rough ride with lots of nausea, pain and sleepless nights, but today he’s feeling much brighter and happier.

All we can now say is “onward and upward on the road to victory”!

Go Marko!!!
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Long hospital stays can be really monotonous. Marko is asleep now and I was thrawling through my phone looking for something to keep me entertained, when this photo popped up. It was taken a year ago, when Marko was originally diagnosed with his “low risk” tumour. The photo took me by surprise, I am shocked that I managed to forget how weak and emaciated he was! Poor baby... his life has really not been a song!

At the same time I am absolutely amazed by this little person’s resilience. Moreover, I am in awe of the ability of the human body to recover itself from such close death calls over and over again. Our family is so grateful for the existence of modern medicine which has given Marko an opportunity to fight this monster which wants to eat him alive. To think that he was litterally on his deathbed twice in the past 12 months and that today he still runs, laughs, smiles, grows, learns like a “normal” toddler is astonishing... it’s truly a miracle!

Of course, we are not naive to the fact that all the procedures he’s having as part of his cancer treatment will undoubtedly leave a permanent mark on his future development. His battle is far from over, but we’re so happy that he is still alive and stands a good chance of ending the war on the winning side.

In light of this, I have a favour to ask - PLEASE, use every opportunity to support reasearch into kids’ cancer therapies. There are so many ways to make a change that don’t have to necessarily come from our wallets.

Pharma companies and governments unfortunately do not invest sufficiently into paediatric cancers. Developing new drugs for such limited, niche market is not very profitable and may not be in the interest of the population majority. But these kids do not deserve to be forgotten just because their problems are rare. There must be a way to overcome these roadblocks. They are so small, they have no voice. Please help us and other parents like us give them that voice. Apart from donating for individual causes, like our fundraiser for the vaccine, you could also use your superb influencing skills and write to the politicians to raise their awareness of this problem, or volunteer for a not-for-profit organisation that is advocating for children with cancer. Maybe ask your employers to support a kids’ cancer charity or research project as part of their corporate social responsibility strategy. With a little good will and creativity, possibilities are endless!

Just think - everybody knows about pink ribbon - breast cancer marketing campaigns have been so successful in raising funds for new, innovative therapies that now people diagnosed with this type of cancer have a 90% chance of survival! Advocates for leukaemia have also done well, cure rates are now above 85% for these children! But for kids like Marko, with rarer types of cancer, the odds are still 50-50, and their little bodies are being treated with harsh drugs designed for adults... this is simply not right. Every life and every child is important, so please, share this post, talk about these kids, make their problems known. Let’s all work together and raise our voices to give them a chance!

With love and gratitude,

Jelena & Andrija
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Raised by 978 people in 5 months
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