These parents have been called 'cruel'. That couldn't be further from the truth.

Simon Moore is a new dad.

Like most fathers, he’s infatuated with his little child: you can tell by the softness with which he cradles her, and the gentle way he jokes about her keeping him busy all day.

Unlike most fathers, however, he suffers from a rare genetic disorder — and has been forced to defend his decision to bring the little girl Alice into the world, knowing that she would likely suffer the same condition.

Related content: “She’s the most outgoing, bubbly, sociable child. And we almost lost her.”

Moore, 30, and Alice, 14 months, both have Treacher Collins (TC) Syndrome, a genetic disorder that affects about 1 in 50,000 births.

The condition is characterised by deformities such as the absence of cheekbones, downward-slanting eyes, hearing loss, a small lower jar and malformed or absent ears. Some affected individuals have additional eye abnormalities that can lead to vision loss.

Moore, 30, and his wife Vicky, 36,  underwent IVF to start a family together after marrying in 2012.

The couple, from Wymondham in Norfolk, could have paid £9,000 (AUD$17,200) for treatment to detect and destroy embryos carrying the TC gene. But they decided not to — and when Vicky fell pregnant and a scan at 16 weeks showed their daughter and inherited Treacher Collins, they decided to keep the baby.

“I’d be lying if I said we weren’t disappointed,” Vicky told Express in the UK of the discover their baby had the gene. “But after going through IVF treatment, and knowing the risks involved, we were just so delighted to see a heartbeat.”

You may also want to read: ‘What a married woman with down syndrome wants you to know.’

Moore says he wasn’t bothered about whether his daughter had the condition.

“I never wished for Alice not to have TC… Even though I grew up with all the problems and complications it really didn’t bother me either way whether she had it or not,” he told Express. “We all knew if she had it that she’d be surrounded with people who loved her whatever.”

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Even after the scan’s revelation that their daughter would carry the TC gene, it was impossible to know how severely Alice would be affected: some individuals may be so mildly affected by the condition that they remain undiagnosed, while others can have severe facial disfigurement and dangerous airway complications.

“It could have been as minor as a slight hearing problem, to being born with no face whatsoever,” Vicky said “It was 50/50.”

Now, although they’ve faced some spectacularly awful comments from strangers and neigbours  — with Alice having been called a “gargoyle” by one child, and a neighbour even calling the parents “cruel” for bringing her into the world, the Moores have no regrets about their beautiful baby girl.

“People literally stop dead in their tracks and point at her. Some have even said ‘ugh’ and laughed,” Vicky says. “I get asked if I’m their carer, and they look shocked when I tell them I’m his wife, and her mum.”

As for Moore — who plans to be a stay-at-home dad when Vicky heads back to work part-time — he’s quite simply infatuated with his daughter, whom he describes as “daddy’s little girl”.

“There’s nothing on this planet anywhere near as special as Alice,” he says. “She’s changed my life.”

We wish little Alice and her parents all the best.

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