Changing Faces, Changing Lives
Stories
every face has a story
these are the voices of our craniofacial community
Our craniofacial community, our “Cranio-Warriors” as we call them, are made up of patients, families, and supporters. Their voices are at the heart of Craniofacial Australia and they demonstrate the power of connection and compassion.
Cranio-Warrior Stories
Click below to filter stories by condition:
Abby was born with Haemangioma and underwent a series of steroid injections from just 3 months of age. Abby says of her experience "It's about being happy about what I have, what I have grown up with and not worrying what others might think”
From the very beginning, Abigail’s journey has been one of strength, courage and love. What started as a parent’s instinct soon became a life-changing diagnosis, and a path that would require resilience well beyond her tiny years.
After her routine 20 week ultrasound scan, mum Angel was called in to her GP’s office. “The baby we’d been trying for, for almost three years would be born with a significant (1cm+) cleft lip and palate."
Archie was born via C-section. The midwife commented on Archie’s large head size and Mum Georgia recalls that this was the first comment in regards to her sons head. The family was over the moon with healthy baby Archie and loved seeing the instant connection between him and his older brother, who was 3 at the time.
Cranio-Warrior Attila has been through a lot in the first 6 months of his life. Mum Katharina reached out to Craniofacial Australia in a bid to raise awareness. In doing so, she leaves an invaluable footprint for other families.
Ava, now 2, was diagnosed at birth with Sagittal Craniosynostosis after nurses noted unusual ridging along her head. She was seen to promptly by the craniofacial unit.
Weeks after second son Benji was born, Natalie’s world went into a spin. After being admitted to hospital for an unrelated virus, a paediatric doctor observed Benji’s head shape and referred him to a specialist team at the hospital.
My daughter Briana was only 2 days old when she first met Professor David. I was in absolute shock when he walked in, knowing how busy he was. How amazing is it that this man cares so much about this little child that has just been born? When he held her on that first meeting, he said ‘You are the most beautiful little girl and we will do everything for you’.
Cathy was born in 2020 in Adelaide, South Australia. At birth, it was noted that she had prominent ridging of the sagittal suture, along with dysmorphic features. She was immediately referred to the Craniofacial Unit, and had genetic testing recommended.
Cecilia was born with a unilateral cleft lip and palate. She was inspired by the care given to her by medical staff during her treatment and is now a nurse herself. “Everyone is different and it can be hard, but when you grow up it’s not going to matter at all”.
When Courtney was born in Hobart, her skull had fused too early and she was missing bone in parts of her head. Since then, she has faced countless surgeries, long recoveries, and the emotional and financial challenges of travelling from Tasmania to Adelaide for specialist care. Yet through every setback, Courtney’s courage shines.
When Cruz was born, mother’s instinct told Bec something wasn’t right. She shares with us her incredible story to find the right answers for her son and receive the treatment he needed for previously undiagnosed craniosynostosis.
We are incredibly blessed to have our own beautiful Cranio-Warrior, Daisy. Daisy is 2.5 years old and was born with a rare genetic syndrome; Apert Syndrome. Apert’s is caused by a mutation of the FGFR2 gene and because neither my husband or I have Apert’s, it’s a random mutation. The chances of having a rare gem like Daisy is 1 in 65000.
Darcy was diagnosed with Sagittal Craniosynostosis at four months old. This was a scary and unknown time for our family, however our Paediatrician and the whole Cranio team were incredible. They went above and beyond to make us feel at ease and provide enough information on the matter / process going forward, this was especially important to us as we had never heard of the condition.
Melbourne-based Ella was recently treated for Sagittal Craniosynostosis. Born prematurely at 26 weeks, she spent 4 months in hospital. At 3 months, Ella’s paediatrician referred her to the hospital’s Craniofacial team.
As a young child, Elliot made it very clear what he was going to do in life, which was everything everyone else does “except better”. Despite living with Apert Syndrome, Elliott is experiencing all that life has to offer.
17-month-old Emilia was born with a Unilateral Cleft Lip and Unicoronal Craniosynostosis. A Unilateral Cleft Lip occurs when one side of the lip has a gap, after failing to join together during pregnancy.
Meet Flora – a bright and resilient little girl born with a bilateral cleft lip and palate. Her family received her diagnosis during a routine pregnancy scan, and from that moment, they began a journey filled with challenges, strength, and hope.
Every story matters - including yours
Every craniofacial journey is unique – filled with challenges, triumphs and everything in between. Every face has a story to tell. By volunteering to tell yours, you’ll not only honour your own experience, but also give hope and encouragement to others walking a similar path. Whether you’re a parent, sibling or supporter, we’d like to hear from you. As a story volunteer, we will make sure that your story is told in a way that suits you.