Story

Boy who underwent surgery for a brain tumour and is undergoing facial reanimation therapy, holding a Minecraft Creeper toy

Marcus’ Story

Marcus is currently undergoing facial reanimation at 9 years old.
He was diagnosed with a brain tumour when he was 20 months old, and while the surgery successfully removed all of the tumour, the messages to his facial nerve stopped working, leaving him with a left facial palsy.

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Woman who had surgery for cleft lip and palate

Kate’s Story

It wasn’t until Kate was 19 years old that her father told her that he fainted at the sight of her as a baby. It is a significant moment, because it indicates just how far Kate has come. Her story is one of anguish and triumph – a craniofacial journey that will last her whole lifetime.

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Man with Apert syndrome

JD’s Story

We have the pleasure of introducing you to Jason Hooper, otherwise known as JD Hooper. The “D” in JD stands for “Determination” – a fitting description of this champion in every sense of the word.

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Young man with bicoronal synostosis

Jacob’s Story

“I was born at 26 weeks gestation and weighed 590 grams in October 2005 and spent just over 3 months in hospital before coming home.
Due to being born so early, I was in the care of Neonatal Intensive Care Unit, Special Care Baby Unit on tube feeds, oxygen and special care facilities to keep me alive.”

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Baby with metopic synostosis and cystic fibrosis 

Isaac’s Story

“From birth, our son has been a warrior.” Born with Cystic Fibrosis and Metopic Synostosis, Isaac has been a warrior from birth. Isaac fought for his first breath with the assistance of Neonatal ICU doctors and nurses as well as in the special care nursery to regulate his own blood sugar.

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Girl with metopic synostosis after recovering from craniofacial surgery

Hazel’s Story

Meet Hazel – Diagnosed with Metopic Craniosynostosis (Trigonocephaly) shortly after birth, her paediatrician recognised the signs right away. At just 6 weeks old, her diagnosis was confirmed with a CT scan, and not long after, Hazel underwent frontal-orbital advancement (FOA) surgery to reshape her skull and support healthy brain growth.

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Boy with Hypoxic Ischemic Encephalopathy and Unicoronal synostosis

Harvey’s Story

Harvey was born with Hypoxic Ischemic Encephalopathy (HIE) in April 2023.

We were in hospital for a month before we could bring him home. I always knew something wasn’t right with his head, his eyes were not aligned, part of his forehead was flatted and one eye opened more than the other.

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