Judea boy Roman Cebalo celebrated an extra special birthday on Monday, March 10.

The five-year-old was diagnosed with a rare form of leukaemia aged 11 months but is now running about like a normal kid.

“He is into hot wheels and minions, and enjoys swimming, athletics and playing with his friends,” said mother Courtney Cebalo.

She said navigating her son’s cancer journey was only made bearable by support from the Child Cancer Foundation – which has its annual nationwide Street Appeal today, March 14, and Saturday, March 15.

“If I didn’t have that support and those check-ins I would’ve probably ended up in a heap on the floor.”

Roman’s health crisis began in November 2020 when he was seven months old.

“He developed life-threatening croup, and ended up in an intensive care unit for six days,” said Courtney.

On leaving hospital, Roman developed a red, raw rash on his face.

“We’d later learn he was allergic to antibiotics he was being given but at the same time he was developing this full-body rash,” Courtney said.

A week before Christmas 2020 a paediatrician requested Courtney take Roman to Starship children’s hospital in Auckland for a bone marrow biopsy.

“No-one could figure out why he was getting this rash.”

Discharged Christmas day, Roman and his mother returned home.

“But he was still sick and we didn’t know why. It was awful. Looking back now he was lethargic, pale, snotty and chesty.”

Courtney Cebalo and son Roman’s live were turned upside down when he was diagnosed with a rare form of leukaemia at 11 months old. Photo / Supplied

The family was recalled to Starship and Roman, then aged 11 months, was diagnosed on February 23, 2021, with Juvenile Myelomonocytic Leukemia. It was later discovered he also had an under-developed airway, called Tracheobronchomalacia.

After diagnosis, Roman had two rounds of chemotherapy, followed by a round of conditioning chemotherapy to kill the body’s bone marrow; then a meticulously-timed Cord Blood Stem Cell Transplantation on June 1, 2021, to graft the new blood for it to be accepted by his body.

Roman’s donor lives in Melbourne.

Courtney said if Roman didn’t have the transplant he’d most certainly have died. “It took 16 days to start seeing any signs of grafting.”

Roman Cebalo was very sick before he received a Cord Blood Stem Cell Transplant on June 1, 2021. Photo / Supplied

Thankfully Roman’s body accepted the transplant blood and his health had massively improved.

No longer on medication for leukaemia, he’s now a normal kid, said Courtney.

“The funny, smart, creative, cheeky, fun-loving, caring boy still has a million medical appointments but is living a typical five-year-old’s life.”

Courtney found Roman’s cancer journey very overwhelming – especially when meeting and being contacted by a range of health professionals.

“Post-diagnosis I’d missed quite a few calls from the Child Cancer Foundation. On the fourth I rang back and got our family support co-ordinator.

When I met with her everything got blurted out and it was like a big relief. [It was] Like she’d just picked me up and carried me through the whole situation.

“She called me regularly, and supported me every time I had a worry.

“I’d just call her and say: ‘I can’t do this…’ and she’d say: ‘You can do this and this is how we’re going to do this’.”

The Cebalo family had a family support co-ordinator in Auckland and Tauranga. In Auckland, Courtney received wellbeing support.

In Tauranga, a firewood delivery helped Courtney, who wasn’t working at the time. There was also travel vouchers, counselling, grocery and care packages.

Roman also received passes to kids’ attractions for his birthdays.

“Even now they give us vouchers.”

Courtney Cebalo and son Roman’s live were turned upside down when he was diagnosed with a rare form of leukaemia at 11 months old. Photo / Supplied

Roman will be four years post-transplant in June.

“He’s on six-monthly checks. Currently his donor cells sit at 96%, so as long as those donor cells keep doing what they’re doing the leukaemia should stay away.

“He’s in what’s called morphological remission, which means nothing is happening – but he’s still at that risk,” Courtney said.

Only in the last few months had she accepted what had happened.

“Roman just has to get to five years to be deemed cancer-free as such.”

Courtney used to donate to CCF but never thought she’d need them.

“Back then I didn’t know what they did. Now, being on the side of receiving their support, what they offer is just so incredible.

“Just having the check-ins, support, the practical help, mental support…they are a special bunch of people.

“They are just there – even when you don’t know you need them, they are there. Whatever you need, they will find a way to help you.”

Foundation chief executive Monica Briggs urged Kiwis to donate to the March 14-15 street appeal.

“Every week in Aotearoa, three more families receive the devastating news that their child has cancer. Our support is ongoing, often spanning years, as families navigate treatment and recovery.

“The cost to deliver our vital services is $6.5 million per year, and we receive no direct government funding.

“That’s why our Street Appeal is so important – every donation, big or small, helps us be there for these families when they need us the most.”

Collection sites will be set up across Aotearoa, or donate online at: childcancer.org.nz