‘Her body wanted to die’: How Telethon-funded treatment saved Bubba Kaio Rerekura’s life

Bubba Kaio Rerekura is a five-year-old force; a “warrior princess” who has a ferocious right kick in mixed martial arts — using a leg almost lost to sepsis — and who can swim like a fish with just one lung.

That Bubba is even here at all, to boss her four sisters around, hug her parents and apply a coat of lip gloss, flick back her hair and take on the world, is more than a miracle.

It is a testament to compassionate, brilliant and innovative medical teams who never stopped looking for answers as Bubba’s tiny body was ravaged by a deadly infection, to her family’s unwavering faith, and to community. The family and friends who kept them afloat and the people of WA who continue to support Telethon each year.

Having faced the worst and come out the other side with their precious family intact, Bubba’s family are sharing their story to raise awareness and funding.

They, and WA doctors, are desperate to ensure more children can access the emerging, innovative therapy which helped to save her life, and which has limited availability in WA.

On Saturday night, Bubba’s mum Charky Kaio Rerekura shared her family’s story on the Telethon Ball stage, delivering a powerful address to a generous audience of philanthropists, politicians and business leaders.

It came almost two years after the Rerekuras’ world was rocked by an innocuous cut on Bubba’s hand. Unbeknown to the family, that cut became infected and progressed to severe sepsis, which was discovered when the three-year-old was rushed to hospital with intense leg pain and a fever.

Bubba underwent surgery to investigate the swelling in her leg, but soon after, her body went into septic shock and her organs started to fail. Suddenly their chubby-cheeked, free spirited “boss baby”, who loved princess dresses and playing in dirt, was in the fight of her life.

“The moment that changed my life forever was seeing Bubba for the first time in a coma. Nothing prepares you for that,” Charky told The Sunday Times.

“One minute you’re a normal healthy family living your normal life, and the next you’re standing over your little girl, covered in tubes and wires, surrounded by machines keeping her alive.

“She looked so small. So fragile. So lifeless. I remember staring at her and waiting for her to squeeze my hand, open her eyes, do anything. But she couldn’t. It felt like my heart had shattered into a million pieces.”

Charky and her husband Thornton were told they had five minutes to sign paperwork consenting to placing her on life support while they fought to save her.

“We were told that Bubba’s body wanted to die. I can’t even explain the pain after hearing those words. It was a real-life nightmare,” Charky said.

Bubba was placed on an extracorporeal membrane oxygenation unit (ECMO), an advanced Telethon-funded life support system which takes over the function of a patient’s heart and lungs during critical medical crises.

“The sepsis was in her bloodstream, it was killing her organs slowly. They had to cut meat off her leg, and they thought she might need amputation,” Charky recalled.

Bubba’s case was complicated by the fact her infection was antimicrobial resistant, meaning there were fewer antibiotic treatment options. Doctors were in a race against time.

Among them was her treating clinician Dr Anita Campbell, an infectious diseases expert at The Kids Research Institute Australia, who told The Sunday Times that Bubba was one of the sickest children she had cared for with Staphylococcus aureus sepsis.

“She was critically unwell, attached to a life-support machine and requiring the care of large teams of medical, nursing, and surgical staff,” she recalled.

As Bubba’s condition deteriorated, it was Dr Campbell who initiated and coordinated a last resort option: a promising emerging treatment which uses naturally occurring viruses called phages to find and kill specific bacteria.

But there was a problem. The treatment wasn’t available in WA, and had never been carried out in the State before.

Phage manufacturing only takes place interstate and must be requested for use in WA under compassionate-use protocols; it is a complex process which means crucial time delays.

Dr Campbell was able to access an existing phage cocktail which was part of a clinical trial at Sydney’s Westmead Institute for Medical Research Laboratory led by Professor Jon Iredell and Associate Professor Ameneh Khatami.

On Bubba’s third day at PCH Dr Campbell started the approvals process, first through the Therapeutic Goods Administration as well as ethics and governance committees at hospital level.

In the meantime doctors and nurses in the ICU continued antibiotics, multiple other treatments, operations and intensive care support. And her mother prayed.

“In our darkest moments, her doctors never stopped fighting for her,” Charkay said. “Their compassion, dedication, and unwavering belief in Bubba gave us hope when we felt like we had none.“

On November 5, 13 days after Bubba was admitted to PCH, the final tick of approval was received for Bubba to receive the phage therapy. Westmead, having anticipated the pending approval and knowing every minute mattered, had already flown the frozen phage cocktail to PCH.

Bubba received the phage intravenously, and via a nebuliser, as she had developed pneumonia and was suffering an acute bleed which would lead to the removal of her right lung.

As the days went by, Bubba came back to life. But she still had a fight ahead. She remained on ECMO to help her surviving lung and it would be three agonising months until she left the intensive care unit.

“It was soul crushing. She’d had 12 major surgeries, the infection started to leave her body, but then she started another journey fighting for her life,” her mum said. “It was a roller coaster.”

While the bacterial infection had been brought under control, Dr Campbell explained, children can continue to experience life-threatening complications and require intensive medical and surgical support.

Just two days before Christmas, when Bubba had been in hospital for almost two months, the family were told to spend as much time with their daughter while they could.

“The surgeons and doctors had done everything that they could, and we had to pray for a miracle,” Charky said.

“They said ‘she she’s not doing good, and she’s going downhill and fast.’ But because of our faith in Jesus Christ, it held me strong. I just kept praying for her. We had such unwavering peace over us, we just knew, especially me. I just knew in my heart that she was going to be OK.”

On Christmas Eve, their miracle arrived. Bubba’s loved ones heard the words they had longed for since late October.

“The doctors, the nurses, the surgeons, they said ‘she is going to be OK,’” Charky said.

“Her vitals just completely turned, and they couldn’t believe it. We could finally wake her up a bit, she was nodding at us like she could understand. It was the best Christmas ever.

“From that day forward, she just started recovering, like miracle after miracle after miracle. Her leg started healing on its own, her vitals were coming right. We could get her off sedation, and then off the ventilator, she could wear a mask and she could slowly do physio.

“Just one day at a time, she was getting stronger. She was just like a living, breathing miracle.”

After 65 heartbreaking days, Charky’s parents were finally able to give their little girl a hug. Something they now never take for granted.

“Before sepsis, you take tomorrow for granted. You assume there’ll always be another cuddle, another bedtime story, another ‘I love you’. Then one day you’re sitting beside your child wondering if you’ll ever hear their voice again,” Charky said.

“That changes you. We just walk in so much gratitude, so much love and joy, we don’t waste a second. Of course, we have our days, but we end the day in gratitude for our family, our life and our togetherness.”

The family was also lifted up by its community, from their local church, to strangers who contributed to fundraisers which allowed them to be by their daughter’s side, and Charky said medical staff had become like family.

“They loved Bubba, fought for Bubba, and walked beside us through the hardest days of our lives. We will never forget any of them,” she said.

Dr Campbell said Bubba’s progress after phage therapy was extremely encouraging, and her experience highlighted the urgent need for more laboratory and clinical research to understand the contribution phage can make to treating children with bacterial infections.

“Bubba’s recovery reflects not only her extraordinary resilience and the strength of her family, but also the dedication of the many healthcare professionals involved in her care alongside access to life support (ECMO) and bacteriophage therapy,” she said.

The vision is for other WA children with a drug resistant or difficult-to-treat infection to have rapid access to phage therapy as a standard of care, something Charky is now deeply passionate about.

“Bubba was so lucky to have access to the ECMO machine, which was funded by Telethon, and the phage therapy, it saved her life,” she said. “Being able to share Bubba’s story, so that Telethon can continue to save lives, is an honour.”

Royal Perth Hospital and The Kids Research Institute Australia are developing Australia’s only dedicated Good Manufacturing Practice (GMP) bacteriophage manufacturing facility for pharmaceutical use.

Associate Professor Anthony Kicic, Phage lead at The Kids, said it was hoped doctors could have more options when a serious bacterial infection is difficult to treat with antibiotics.

“Every child’s situation is different, and phage therapy is not a promise of a cure, but with continued research and support, it could become an important part of the treatment toolkit,” he said.

Bubba left hospital on February 18, 112 long days after she arrived. She is now thriving, loving school and martial arts and can’t wait to start playing netball.

“Bubba is the strongest little girl I know. She is our warrior princess. We don’t rush through life anymore. We stop and soak it in because we know just how quickly everything can change. And we use our pain to help others,” Charky said.

“Our wish is for Bubba’s story to reach far and wide, inspiring awareness and support for phage therapy research. If sharing Bubba’s story raises awareness about sepsis and saves even one child, then every conversation is worth it.”