Help our family to save our sweet 3-year-old from a cruel childhood cancer.
Amidst the COVID isolation and lockdowns in Melbourne last year, our family received the unthinkable news that our sweet baby boy Manoli (Oli) has cancer. Tests revealed it to be stage 4 Neuroblastoma with MYCN amplification.
Neuroblastoma is a very rare form of childhood cancer, with only 30 to 40 cases diagnosed each year in Australia. It is an aggressive cancer that is typically found in children under five and it only has a 50% survival rate.
Oli is currently undergoing a gruelling 18+ months of treatment at the Royal Children’s Hospital. He has already endured five months of chemotherapy, a 12 hour surgery to remove a 10cm tumour from his stomach, and then an extremely painful stem cell transplant. He has been an inpatient at the Royal Children’s Hospital since 30 December with post surgical complications. He still needs to undergo radiotherapy and immunotherapy.
At the end of all of this, there is a 50% chance of a reoccurrence. Because there are extremely limited options within Australia to prevent a devastating relapse, we need to travel to the USA where Oli will take part in a potentially lifesaving trial to prevent the Neuroblastoma from returning.
Unfortunately, these vaccines come at a huge cost of around $400,000, plus all of the associated travel expenses.
This is why we are asking for help to get Oli access to this vital treatment. Losing him is simply not an option.
It is an overwhelming journey we are on and there are so many uncertainties. Your support means everything to us and we thank you from the bottom of our hearts for your generosity. Your help will allow Oli to get the lifesaving treatment he needs overseas, and support our family to manage the costs that come with fighting childhood cancer.
Follow OLI'S JOURNEY on Facebook : https://www.facebook.com/groups/265618517802479/
OLI'S TEAM on Instagram : https://www.instagram.com/olis_team/?hl=en
Read on for more detail about Oli’s cancer, the treatment plan, our family and what this devastating news has meant for us all.
Oli is a 3-year-old who lives in Melbourne, Australia. Oli has the sweetest demeanour and has a special place in so many people’s hearts. He was born just two weeks before his Pappou (grandfather) passed away at only 61 after battling his own rare cancer -
Multiple Myeloma. He was named after his Pappou. This was one of the hardest periods of our family’s lives, during this time he brought an abundance of light and comfort for us all during those dark days of grief.
Oli has an older sister Alesia (5 yo) and welcomed his younger sister Thalia in October 2020. He has a very special bond with them both. He has so much love to give. Oli loves tram and train rides, playing with play dough and drawing, and spending time with his family and friends.
On 11 September 2020 our world fell apart. At 3:10pm Joel (Oli’s dad) got the dreaded call from the senior doctors at the Royal Children’s Hospital requesting to meet regarding one of Oli’s test results.
Prior to this call, in late August, Oli had begun limping and refusing to walk, and after various scans the Orthopaedic team determined he had a fractured femur bone and an infection in the hip joint area. He was diagnosed with Osteomyelitis and was placed in a hip spica brace for 4 weeks. The infection did not get better with the antibiotics and surgery, so the surgical team suggested that Oli have a bone marrow biopsy, thinking that he picked up a bad bug.
Joel was in the hospital with Oli at the time, and Leni (Oli’s mum) was at home about to visit her GP because she was 35 weeks pregnant and experiencing bad cramps. Joel realised he was about to get bad news as he could see the doctors congregating at the door.
They walked in and sat him down and asked him to call Leni. It was then that the family were told that the bone marrow biopsy showed something more sinister than an infection, and that he had Neuroblastoma. From that moment our lives were changed forever.
Since September 11, Oli has gone through:
-5 cycles of chemotherapy
-a 12 hour surgery to remove the primary tumour
-high dose chemotherapy followed by a stem cell transplant
-been in a hip spica brace and plaster cast for 6 months, which resulted in burns from the chemotherapy and pressure sores on his backs and legs.
-had numerous biopsies, ultrasounds, xrays, and scans
-been under general anaesthetic 25 + times
-had a lymphatic leak which has required multiple surgeries to try and fix
-has been on IV nutrition since January and has not been able to tolerate feeds through his nasal gastric tube or mouth.
Following complications from his tumour removal surgery, Oli has been an inpatient in the hospital since December 30th, with Leni and Joel swapping staying the night.
Oli still has the follow treatment to complete:
-2 and a half weeks of radiation, where he will have to go under general anaesthetic daily.
-6 months of Immunotherapy.
We are so grateful to the Royal Children’s Hospital and the amazing nurses, doctors and support staff for looking after our boy and supporting our family .
All of the money raised from this page will go towards Oli's treatment and recovery, as well as practical support such as childcare. Any money that is not used for this purpose will be donated to Neuroblastoma Australia and other amazing charities that have supported our family during this time. If you have any questions please don't hesitate to contact us and someone will get back to you as soon as possible.
From the bottom of our hearts we thank you for your generosity and support.
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