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.
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.
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.
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.
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.
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.
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.
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.
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.”
Anne-Marie’s Story Read More »
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.”
