After years of debilitating pain, three Adelaide siblings are living life to the fullest following pancreatectomy
Sisters Demi (left) and Chelsea Holloway (right) both received Total Pancreatectomy and Islet Auto Transplants at Adelaide's Women's and Children's Hospital. (ABC News: Brant Cumming)
In short:
Siblings Chelsea, Joel and Demi Holloway were all diagnosed with hereditary pancreatitis — a debilitating and painful condition which is 70 per cent more common in Indigenous Australians.
The trio have undergone a rare and specialist procedure in which the pancreas is removed and islet cells are harvested and transplanted into the liver.
What's next?
It is hoped the procedure will be expanded beyond two Australian children's hospitals.
From early childhood, Chelsea Holloway experienced regular bouts of excruciating pain and nausea.
It was so debilitating she often had to spend time in hospital on intravenous fluids and strong pain relief.
The mystery condition would come and go, creating anxiety about when the next wave would hit.
"Once it's settled, you're just a bit of a ticking time bomb until the next attack happens,"Ms Holloway said.
When she was 10, she finally got some answers. She was experiencing a pancreatitis attack.
Not long after her diagnosis, her younger brother Joel presented with the same symptoms.
First Nations siblings Chelsea (left), Demi (centre) and Joel Holloway (right) all say life has drastically improved since their surgeries. (Supplied)
"The doctors put two and two together — 'same family, same pancreatitis attack, we think we need to look further into this' — and then that's when they did the whole family genetic testing," Chelsea said.
They found that three of the five Holloway siblings had hereditary pancreatitis, with Chelsea and Joel's younger sister, Demi, the next to be diagnosed.
"It's from our mum. She carries the gene mutation, but she doesn't have any symptoms, so she's just a carrier," Chelsea said.
Now, all three siblings have undergone a specialist pancreatitis surgery in which the pancreas is removed and insulin-producing islet cells are harvested and infused into the liver.
"Once the islet cells have been harvested, there's basically nothing left of the pancreas because it goes into a liquid where it's kind of shaken up, and the pancreas kind of just dissolves," Chelsea said.
The siblings now take pancreatic enzymes to help them break down their food and were given pumps to help their bodies produce insulin in the aftermath of the surgery.
"I'm only on a very low dosage [of insulin]. Demi is still on insulin because she's so fresh out of surgery so her islet cells are still kind of preparing themselves, and yeah, just a bit of a waiting game," Chelsea said.
"Joel is not on any insulin at all, no pump, no injections or anything, he's just completely self-sufficient.
"I'll be on a pump forever … [but] being a diabetic outweighs living with pancreatitis, so it's not a big deal at all to me."
Demi Holloway is an aspiring professional football player and hopes pain will no longer hold her back from achieving her dreams. (ABC News: Brant Cumming)
For Demi, an aspiring AFLW player, it is hoped the end to her pancreatitis will bring more opportunities in sport.
"That was just such a big thing for me; having to miss out or play the games with the pain and have a bad game," she said.
"I missed so many games, I've had opportunities kind of taken away because I've always been in hospital or didn't get to play up to my best."
Despite her health challenges, she currently plays state football and recently won an Adelaide Crows Foundation Next Generation Academy scholarship for emerging footballers.
Chelsea Holloway says it's reassuring to know the surgery is available locally if her two young children were to develop the same condition. (ABC News: Brant Cumming)
Demi underwent her surgery in September and said she was looking forward to being back on the football field and celebrating kicking goals with a scar reveal.
"It's something to be proud of, because at the end of the day, it's changed my life so positively, [so] why would I ever try to hide it?,"she said.
"And also having my older sister and my older brother have [the scar] as well, it's kind of just like, they shouldn't be embarrassed so why should I?"
Adelaide's Women's and Children's Hospital is one of only two hospitals in the country currently performing the Total Pancreatectomy Islet Auto Transplant on children.
The other is Westmead children's hospital in Sydney.
Paediatric surgeon Dr Sanjeev Khurana said as well as being painful, repeated bouts of pancreatitis could lead to the organ's failure or pancreatic cancer.
He said there was nothing that could be done to prevent or reverse the process, and treatment was to manage pain and acute flare-ups, but by removing the pancreas completely and isolating the islet cells, severe and debilitating cases could be better managed.
"The intention is that at the very least, if these kids are going to become diabetic, their diabetes control is much better and [more] manageable, because they do have some base minimum insulin production from these islet cells," he said.
Demi wears her scar and insulin pump with pride. (ABC News: Brant Cumming)
"Our aim is to get rid of their debilitating pain so that they can go to school and be normally productive. Our aim is to give them a healthy, routine, active lifestyle, and in the long run, they do not have the risk of pancreas cancer."
The Women's and Children's Hospital has completed 11 of the procedures since it was made available in 2015.
"That may not sound like a huge number, but … we believe we have changed their lives," Dr Khurana said.
"They are now able to go to school. They are able to actually come off their narcotics. And yes, some of them are insulin dependent, but they are in a far better place."
He said the condition was 70 per cent more common in Aboriginal and Torres Strait Islanders.
"While this may not be rampant, there is a significant proportion of children, especially Indigenous children, who stand to gain from this," he said.