When a child is diagnosed with a rare and complex colorectal condition, life can change in an instant. Parents are suddenly navigating unfamiliar territory – from bowel washouts to stomas. It was these exact challenges that inspired Sarah and Seija’s commitment to ensuring that no family should have to face these hardships alone.
Sarah’s son was diagnosed with Hirschsprung’s disease at just six days old. This rare and complex congenital condition meant that his large bowel formed without nerves and was unable to function properly, resulting in lifelong medical care and a new reality for their family.
As Sarah came to terms with her son’s diagnosis, she formed a friendship with Seija, whose daughter was born with an anorectal malformation. Brought together by their experiences at the RCH, the mothers developed a connection and shared gratitude for the exceptional care their children received.
“These conditions carry profound medical, emotional and social impacts, yet remain physically hidden,” Sarah and Seija said, the co-founders of Colorectal Champions Auxiliary.
Both families have navigated the extensive medical journey that comes with colorectal conditions, including surgeries and prolonged hospital admissions, giving them a deep understanding of the emotional and practical challenges faced by families in similar situations.
“The taboo surrounding bowel dysfunction means many families feel unable to speak openly, reinforcing isolation and limiting broader understanding.
Children living with complex colorectal conditions deserve expert care that protects their dignity and enables full participation in everyday life,” the mums highlighted.
This shared purpose and appreciation for the RCH’s excellent care resulted in the establishment of the Colorectal Champions Auxiliary in 2025.
“We wanted to raise money for the RCH, because that is where the best surgeons and the best care for colorectal conditions is in Australia. We want to support the hospital to ensure they can continue to deliver world-class service to children and their families,” Sarah shared.
Beyond fundraising, the group is also focused on raising awareness to help reduce stigma and improve understanding of these conditions.
“We want to build awareness around colorectal conditions, so people can understand the burden on children and families experiencing these complex conditions and are more inclined to support them,” Seija said.
Since officially launching the Auxiliary in March 2026, they have raised over $83,000– an incredible achievement. They are grateful to see their group continue to grow and to be so warmly welcomed by their fellow Auxiliary members.
Looking ahead, the Auxiliary hopes to establish an annual flagship event and increase community awareness, to create a lasting impact for children living with colorectal conditions.
“We are striving to ensure infants born today receive life-changing colorectal care, that their families are supported, and that they have hope for their child’s future,” concluded Sarah and Seija.