Story

Mother with craniosynostosis holding her child

Courtney’s Story

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.

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Baby with sagittal synostosis held by family outdoors

Archie’s Story

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.

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Sarah’s story

In 2017, Sarah underwent 18-hour long surgery to remove a rare Adenoid Cystic Carcinoma from the inside of her face. She has undergone transformation in more ways than one, using the trials, tribulations, wisdom and self empowerment she has learned along the way.

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Cecilia’s story

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”.

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Boy with complex craniofacial cleft in process of multiple surgeries

Selva’s story

Selva was born with a rare craniofacial cleft that affects both the bones and soft tissue. He has moved forward in the face of adversity, having had over 15 surgeries. He says “Even if someone said tomorrow I could totally remove all the scars, I probably wouldn’t because I have accepted the way I am”

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Lucas’ story

Brave Lucas was born with Hemifacial Microsomia and has undergone 6 surgeries so far. Despite the challenges, Lucas and his family are grateful to be able to access the treatment and support for Lucas to be able to live to the full.

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Young woman who was born with cleft lip and palate

Briana’s story

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’.

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