Around one in 18,000 children are born with the condition
A loving mother has opened up on raising a child with a rare congenial birth defect, saying she wasn't sure if 'we would be able to take her home'. One-year-old Clemie Roberts-Dadley was born with Pierre-Robin Syndrome, a rare condition characterised by an underdeveloped jaw, backward displacement of the tongue and upper airway construction.
"Being out and about with breathing tubes, suction machines, breathing tubes and now a very visible hearing aid, we just attract attention and it's not always positive attention. It's constant questions about what's that on her face or on her head. "It was 100 days of not being able to be together. So it was one parent in, one parent at home with the younger two who had this beautiful sister that they'd never met.
"We put it to the girls and they were just really excited by it. It's just great that we could do it all together.
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