“I’m so happy the pain is gone,” Daisy said. 

Since being diagnosed with chronic pancreatitis, ten-year-old Daisy has lived in debilitating pain. That was until an innovative surgery took that all away. Now, after a month in hospital, she has returned home with a new lease on life.

Chronic pancreatitis is a long term and progressive condition, characterised by the ongoing inflammation of the pancreas. This inflammation leads to scarring, which causes irreversible damage to the pancreas and impairs its ability to produce the enzymes and hormones necessary for digestion and metabolism.

The condition is unfamiliar to many but all too real for Daisy, affecting her ability to eat, play and simply enjoy being a child.

“What started as one bad day every six months became six months of bad days,” Daisy’s mum, Jessica said. 

“It’s hard to remember a day where Daisy wasn’t in agony. She had a 16cm cyst on her abdomen, had lost 12kg because she couldn’t eat without being in pain and all she wanted to do was sleep. It was horrible because there was nothing we could do.” 

“When I would get into class I would start crying and I would put my arm on the table and start bending over,” Daisy added.

With treatment opinions limited and an increased risk of pancreatic cancer, Daisy’s hope for relief came in the form of an innovative procedure known as a total pancreatomy and islet auto-transplant. 

This operation, only performed in Sydney and Adelaide, required Daisy and her family to travel from their home in Western Australia to The Children’s Hospital at Westmead, where Paediatric Transplant Surgeon, Professor Gordon Thomas, took on her case with promising prospects. 

It is the fourth time the surgery has been performed on a child in NSW.

“They said we were going to do this big surgery, and I was like, ‘nuh-uh’,” Daisy said. “Then when we met Dr Thomas for the first time and he did these drawings of the operation, I started to get it. I realised that if I had the surgery, my life would be normal.” 

The major surgery involves surgeons removing the entire pancreas, transporting the organ to Westmead Hospital, where a specialised team isolates and extracts the islets, before returning them to the surgeons to reimplant into the liver.

This allows the islets to thrive in their new home within the liver, enabling Daisy to continue producing her own insulin independently. The biggest benefit though, is it immediately offers her a life free from the pain associated with her condition.

“The remarkable thing with this surgery is that these cells find their new home inside the liver and over time they establish blood supply, so they start producing insulin. The impact of this is life-changing, totally eliminating Daisy’s pain,” Prof Thomas said. 

“This is a big surgery, and it would not have been possible without a big team. It was the efforts of all the people in this team that changed Daisy’s life.”

In the initial months without a pancreas Daisy will be a type one diabetic and will require an insulin pump, but over time, her body will adjust and will be able to maintain sugar levels on its own, and signs are promising.

“It is early days, but Daisy is doing really well,” Prof Thomas said. “She is requiring less insulin from her pump than anticipated, her smile is coming back and she is making lists of all the things she wants to eat, which is so nice to see.”

Now back home in Western Australia, Daisy eagerly anticipates returning to school with her friends and playing a backyard game of footy with her brother, Lewis, and former AFL star dad, Lewis Jetta. 

Reflecting on their time in hospital, Daisy and Jessica expressed their gratitude for the unwavering support she received. 

“I’ve spent so much time in hospital that it has become my second home,” Daisy said. “Dr Thomas visited me every single day, only missing when he had surgery, but even then, he still came by at night while everyone slept.”

“I love Dr Thomas and the team for what they have done for our family,” Jessica added. 

“From having a child constantly in pain to now having no pain is amazing. We have our Daisy back.”

This year’s Sydney Sick Kids Appeal by Sydney Children’s Hospitals Foundation is aiming to raise $15 million. The funds raised will support the incredible strides made in paediatric healthcare and the profound impact these advancements will have for children and young people, like Daisy, and their families.

To donate, visit www.schf.org.au