SA’s Holly Zerk is fighting a high-risk neuroblastoma cancer and needs DFMO immediately available in Australia

It was going to cost Holly Zerk’s family $500k and a two year trip overseas to fight her deadly cancer. Today, in an amazing victory for young cancer patients, that all changes.

• Major victory in cancer fight for Aussie kids

Holly Zerk, 7, is fighting a deadly cancer that kills more children under the age of 5 than any other – and until now, lifesaving treatment was potentially out of reach.

Holly and other desperate families have been relying on charity to fund a $500,000 lifesaving treatment for the deadly childhood cancer available overseas.

Now they will be able to get it for free in Australia.

Health Minister Mark Butler has agreed to fund the medicine DFMO (difluoromethylornithine) in Australian hospitals.

The decision will benefit around 20 children with high risk neuroblastoma a cancer that affects the nervous system and is most common in babies under five.

The move came after The Advertiser highlighted Holly’s plight as her family desperately tried to raise up to $500,000 for the treatment which could slash the risk of the cancer returning by almost 50 per cent.

Pharma company Norgine will make DFMO available to Australian patients for free under a compassionate access scheme while it pursues the necessary approvals for a PBS subsidy.

Holly was ­diagnosed with high-risk neuroblastoma, which had spread to her spine and lymph nodes.

Holly’s mum Lee-Anne McCracken was at the clinic with their oncologist when she found out the news on Wednesday.

“We couldn’t believe it,” she said.

“We’re all thrilled, it’s just incredible - It’s such a huge win for the kids.

“We want to thank him (Mr Butler) from the bottom of our hearts.”

Holly was also thrilled: “I can do my treatment in Australia and go to school and netball and dance instead of heaps of plane rides.”

A normal day at Balaklava Primary School last year turned into a nightmare for the then six-year-old when her neck began to itch from a suspected bee sting. But when the “bite” began to swell uncontrollably, teachers knew something was wrong.

Holly Zerk, 7, with her family, Mum Lee-Anne McCracken and Dad Travis Zerk. Picture: Kelly Barnes

Holly Zerk with her family, Mum Lee-Anne McCracken, Dad Travis Zerk and siblings Jameson 10, Tahlia 13 and Mason 12. Picture: Kelly Barnes

“The lump kept growing so they called us and we went to hospital, were rushed to Adelaide with a half tennis ball size lump,which they initially thought was an aneurysm,” mum Lee-Anne McCracken said.

It wasn’t until Holly, the youngest of four children, underwent scans that their worst fears were confirmed, revealing the lump was the top of a tumour deep inside her chest.

“It was about 11 o’clock that night scans came back and they said it was the top of her tumour that went down into her chest,” she said.

“She had no symptoms at all. I fainted, I was there by myself because we thought it was no big deal and I woke up in emergency.”

Holly is one of 40 kids diagnosed with neuroblastoma in Australia each year.

Half are classified as high risk with a 50 per cent survival rate post-treatment, which plummets to about 5 per cent for those who relapse.

The groundbreaking DFMO treatment works by stopping cancer cells from growing and has shown to halve relapse rates and improve survival rates in recent clinical trials.

Holly’s parents Lee-Anne and dad Travis Zerk were in the preliminary stages to be part of the trial in the US prior to today’s announcement.

Holly Zerk is fighting neuroblastoma. Picture: Kelly Barnes

The trip would have cost Australian families $500,000 for medical expenses alone but Holly’s parents were determined to “leave no stone unturned”.

“As a parent it’s a lot of money but you just do it, you would try anything that you can to stop that relapse. You’d regret not trying,” Ms McCracken said.

However it would have meant the tight-knit family of six would spend the next two years apart, with one parent travelling to the US with Holly and the other staying in Australia with her siblings Tahlia, Jameson and Mason.

“One of us would go with Holly and the other would stay home with the other three so that’s another challenge in itself splitting up a family of six,” Mr Zerk said. “But you do what you have to do and you start with plan A and work your way through it.”

Since her diagnosis in June 2023, Holly has spent the past 13 months undergoing intense treatment including multiple rounds of chemotherapy which has completely destroyed her immune system.

Earlier this year, her parents bought a townhouse in Prospect to act as a base for the family as they travel between Adelaide and Balaklava for treatment.

The cancer in her spine and lymph nodes have now cleared but there is still “one deep in her chest” and will have to wait until September to see if it has matured.

Despite this she continues to radiate positivity and started playing netball and dancing this year.

Holly is fighting neuroblastoma, a cancer affecting the nervous system. Picture: Supplied by family

Today’s announcement means DFMO will be available in Australia. Picture: Supplied by family

“She’s always been smiling, just sits and grins and bears it,” Mr Zerk said.

“She plays netball, she starts doing dance and goes to school a little bit when she can,” Ms McCracken said.

On Tuesday she even participated in her school’s sports day and came fifth in the sprints, which made her family very proud.

While undergoing treatment, Holly hasn’t been able to be fully submerged in water and can’t wait to go swimming in her family’s pool once it wraps up.

“We’ve got a slide that I haven’t used yet,” she said.

Originally published as SA’s Holly Zerk is fighting a high-risk neuroblastoma cancer and needs DFMO immediately available in Australia