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A young man in in a wheelchair, wearing a floral shirt.

A baby lying in a bed with a little blue blanket. The baby has a tube up his nose, taped to his face.

A family of four - mum, dad , son and daughter - smiling at the foggy Golden Gate Bridge.

Two kids smiling directly into the camera. A boy and a girl.

"Feeding was an issue. Kids with Malan actually have a high palate and a lot of teeth, a lot of crowding, big jaws. He wasn't actually creating a seal to breastfeed."

A young boy opening his mouth wide and smiling. Looks like he is laughing.

Two kids dressed for day in the sun pose next to a lifesize model of Lightning McQueen.

A yong man standing on a yellow playground set.

"For some of them it's been years of trying to get a diagnosis and they finally reached one,"
Professor McGaughran said.

A woman in a chequered dress standing in a well-lit office.

A smiling family dressed up for dinner.

"Going forward now, I'm all for throwing ourselves into whatever we can do to get the awareness out there about this syndrome because it is so new,"
Mrs Kokolis said.

A family at a young man's brithday dinner. He has cake and silver balloon shaped in the number 16.

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