Changing Faces, Changing Lives
Rita’s Story
A bright and determined little girl who was diagnosed at just 4 months old. Her journey began with endoscopic surgery to remove the fused suture in her skull, followed by 9 months of helmet therapy to gently shape her head as she grew.
Those early days were incredibly tough for her parents, filled with uncertainty and difficult decisions.
Her mum Tina shares:
“We felt miserable and unsure if we were making the right decisions.”
“Stay strong for your child. The experience can be overwhelming, but our little girl fought so hard to become the clever and bright person she is today.”
Interview with Rita’s Mum Tina…
Age at Diagnosis?
4 months old.
What treatment have you or your child had for this Craniofacial difference?
Endoscopic surgery to remove the fused suture in the skull, followed by 9 months of helmet therapy.
What do you remember most about the early days of treatment?
We felt miserable and unsure if we were making the right decisions.
How has this Craniofacial difference impacted your life and family?
There was constant fear for her development and wellbeing – always worried that something could go wrong.
Is there something you wish more people knew about this condition?
That it’s not your fault as a parent. It’s a rare condition, and even getting a diagnosis and being taken seriously can be a challenge.
What is one piece of advice you would give to someone receiving a similar diagnosis for their child?
Stay strong for your child. The experience can be overwhelming, but our little girl fought so hard to become the clever and bright person she is today.
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