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Dad With Facial Disfigurement Defends ‘Cruel’ Decision To Have Baby With Same Condition

The family have been on the receiving end of lots of nasty comments

Dad With Facial Disfigurement Defends ‘Cruel’ Decision To Have Baby With Same Condition

Dad Simon Moore has spoken out about his choice to have an IVF baby with the same facial disfigurements as him.

The 30-year-old has Treacher Collins (TC) syndrome, which means he has obvious craniofacial deformities, such as no cheekbones, and is also profoundly deaf.

Alice was born with the same rare disease as her dad Simon [SWNS]
Alice was born with the same rare disease as her dad Simon [SWNS]



He himself admits that he spent most of his childhood indoors to escape bullies and still today is the victim of a lot of staring and pointing. Yet despite his own ordeal he and his wife Vicky decided to continue with their pregnancy, when scans showed their daughter had the same condition.

Simon and Vicky weren’t able to conceive naturally and so underwent IVF to start a family. Despite having the option of paying for treatment to detect and destroy any embryos carrying the TC gene, the couple decided against it for financial reasons.

Alice was born with the condition in February last year and despite being only a year old, she’s already the victim of name-calling and abuse and one child called her a ‘gargoyle’.

Alice's facial disfigurements aren't quite as severe as her dad's [SWNS]
Alice's facial disfigurements aren't quite as severe as her dad's [SWNS]



Both Simon and Vicky have been criticized for their ‘cruel’ choice to continue with their pregnancy, knowing that their baby had the same gene as her father.

But Simon says he’s never been happier – and 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 says.

“We all knew if she had it that she'd be surrounded with people who loved her whatever. There's nothing on this planet anywhere near as special as Alice. She's changed my life. There's no doubt about it. She's her dad's little girl and I will tell her she is beautiful every day.”

Alice’s TC is slightly milder than her dad’s – she has full cheekbones and just a small gap below her eyes that makes them droop slightly. However she does have to content with a constantly runny nose and a high palate, which makes feeding times time-consuming for her parents, as she’s constantly hungry. She also struggles with her hearing and has to wear a bone-anchored hearing aid.

Simon says his family is very happy [SWNS]
Simon says his family is very happy [SWNS]



“We didn’t go into this with our eyes closed,” says Vicky, 36, who has three other daughters from a previous relationship. “We had to go through a year and a half of genetic counselling before we even decided to go ahead with trying for a baby.

“If there was an embryo with the TC gene, then the clinic would automatically destroy it, refusing to put any back that carried it.”

Vicky explains that their child’s TC could have been really mild – or very severe. “It could have been as minor as a slight hearing problem, to being born with no face whatsoever. It was 50/50,” she says. “You go with what medical professionals advise you and they supported us all the way with our decision.

“Ultimately, we didn't care if our baby had TC. Simon has the 'classic case' and he's amazing.”

Vicky was sterilised after having her three other and was not allowed IVF on the NHS because she was already a mum-of-three. She says that it’s not just her husband and daughter who are on the receiving end of nasty comments and stares.

“I get asked if I'm their carer, and they look shocked when I tell them I'm his wife, and her mum,” she says. “Some people are blissfully unaware of their own ignorance, while others are just plain nasty.”

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