MUM ON A MISSION TO SPREAD SON'S STORY
A DECADE after her son was diagnosed with a condition which almost left him blind and deaf, a Llanelli mum is still on a mission to raise awareness for others.
Clare Creel is speaking out to ensure other parents don't have to face the same fight as she did to get her young son Steffan Burnett diagnosed with a rare skull condition.
She hopes using her son's story will highlight that there is support out there for those with craniofacial conditions.
"You always see scared parents who don't know how to help their children through it," she said.
"But these days with the likes of Facebook it is like an extended family which will provide help that I didn't have.
"It is all about raising awareness of the condition."
Steffan, who has just begun Year seven at Ysgol y Strade, suffered with a rare form of craniosynostosis when he was a baby — which meant bones in his skull had fused together, causing a deformity.
Infants with the condition usually get diagnosed by the time they are eight weeks old, but doctors only recognised that Steffan had the condition when he was 18 months old.
Early diagnosis is essential to treat the condition, but the Morfa mum-of-two found it very difficult to get her concerns taken seriously.
"I knew deep down something was not right, and I went to the doctors on various occasions as I knew Steffan had a funny shaped head," she said.
"The doctors told me there was nothing to worry about but I went with my gut feeling.
"After months of being told there was nothing wrong with him I asked to see a paediatrician and he was diagnosed straight away."
Doctors found that in Steffan's case, the metopic suture of his skull had joined too early — a rare form of the condition which only affects 15 per cent of all cases.
If he was left untreated there was a chance that Steffan could have lost his sight, hearing and develop behavioural problems due to pressure on his brain.
He was given the operation by specialists in Birmingham six months later.
"There needs to be so much more awareness about the condition than what there is at the moment," Clare added.
"I'm always head spotting looking at babies in prams.
"If they have got a wonky looking head there is probably a reason.
"Steffan has just joined Stradey school and he does have developmental delays which is a side effect of the condition and he is having one to one support for that.
"But he is brilliant and is not letting it get him down.
"I would tell parents to go with their instincts every time and always persist if they think something is not right."
To find out more about the condition, visit www.headlines.org.uk.