A father born with a rare facial disfigurement says he is going to tell his daughter — who was born with the same condition — that she is beautiful every day (video below).
Simon Moore, 30, was born with Treacher Collins syndrome and has suffered a great deal because of it. The condition affects 1 in 50,000 babies and is characterized by facial disfigurements, such as the absence of cheekbones.
Moore spent most of his childhood indoors to avoid bullies and being ridiculed, Metro UK reported. Even to this day, Moore describes dealing with strangers who point and stare at him in the street.
Despite his own struggles in living with TC, he and his wife Vicky decided to keep their baby girl Alice after scans during pregnancy revealed she had the condition.
Some neighbors called the decision “cruel,” but Moore insists he has never been happier.
“I never wished for Alice not to have TC,” Moore told Metro UK. “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.”
“We all knew if she had it that she’d be surrounded with people who loved her whatever,” Moore continued. “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 was born in February 2014. She has a milder form of TC, with full cheekbones and a slight gap below her eyes and malformed ears.
Because of her high palate, feeding Alice is both difficult and time-consuming. She has to wear a bone-anchored hearing aid and has no hole into the inner ear. She can only hear when it’s mostly quiet.
The couple had the child through IVF and Vicky said she had no second thoughts.
“We had to go through a year and a half of genetic counseling before we even decided to go ahead with trying for a baby,” Vicky said. “If there was an embryo with the TC gene, then the clinic would automatically destroy it, refusing to put any back that carried it. But we knew there was no guarantee how bad the TC would be, if the baby would have it at all.”
Vicky explained, “It could have been as minor as a slight hearing problem, to being born with no face whatsoever."
She says of her husband: “Ultimately, we didn’t care if our baby had TC. Simon has the ‘classic case’ and he’s amazing.”
Vicky said that given all the risks involved, the couple was just “so delighted to see a heartbeat.”
“We didn’t care about her TC — we fell in love immediately,” Vicky said. “We risked not having a baby at all by using the specialist method of IVF, but instead we have Alice.”
The mother said her husband still gets stared at while walking in the street. She said some neighbors have even criticized their decision to have Alice and one child called the 1-year-old baby a “gargoyle.”
“People point and stare and Simon often gets funny looks when he walks around the village with Alice,” Vicky said. “They think because of the way he looks he can’t, or shouldn’t be able to, cope with a baby.
“My neighbor even said we were ‘cruel’ for bringing her into the world, but she’s our little angel, and we wouldn’t change a thing about her.”
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