Help Us Support Callie Through Her Journey

Callie has suffered from chronic pancreatitis for the past four years, possibly longer, as it may have gone undiagnosed since she was just seven.

In that time, she has been admitted to hospital 24 times, endured countless scans and blood tests, and missed years of schooling. The toll on her physical and mental wellbeing has been enormous. At times, life has become almost unbearable.

She is now afraid to leave the house in case a flare-up strikes. If you have never witnessed a pancreatic flare-up, especially in a child, it is almost impossible to describe the pain and distress.

There have been countless nights spent awake in agony, crying and asking why this is happening to her and how much longer she can keep going. As her parents, watching our child suffer so much, despite strong medication and years without answers, has been heartbreaking.

Then, in September last year, we finally got an answer. Callie was diagnosed with a PRSS1 gene mutation, explaining so much of what she had endured. After years of uncertainty, the diagnosis was a huge turning point.

Following a specialist consultation in April, we were told surgery is now her only remaining option.

Callie needs a TPIAT (Total Pancreatectomy with Islet Autotransplantation) — a major operation lasting around 15 hours, only available to her in Sydney because of the specialist expertise and equipment required.

After surgery, she will need pancreatic enzymes for life and ongoing blood sugar management, potentially including insulin.