They were told giving birth to her would be ‘cruel’; now this baby with Treacher Collins syndrome is the light of their life
May 11, 2015 (LifeSiteNews.com) – Simon Moore and his wife, Vicky, say their little girl is the joy of their lives. But they are saddened that they had been told it was "cruel" to allow their child, who inherited a rare congenital facial condition from her father, to be born.
Simon Moore, 30, of Wymondham, Norfolk, was born with Treacher Collins syndrome, a condition that affects the development of bones and other tissues in the face. Often its victims will be born with such anomalies as a lack of cheekbones, a receding chin, undeveloped ears, and hearing loss.
Simon, who is completely deaf, met his wife Vicky in 2010 at at sign language class. They married in 2012. The couple resorted to in vitro fertilization to conceive, and knew the risks that Simon's condition could be passed on to their child.
"We didn't go into this with our eyes closed," said Vicky in a Metro report. "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."
Simon and Vicky decided against aborting their daughter, Alice, when tests determined that she had her father's condition.
"We knew there was no guarantee how bad the TC would be, if the baby would have it at all," Vicky said. “It could have been as minor as a slight hearing problem, to being born with no face whatsoever. It was 50-50.”
"Simon has the 'classic case' and he's amazing," said the plucky wife and mum. "Ultimately, we didn’t care if our baby had TC."
She said that medical professionals “supported us all the way with our decision.”
Simon said he “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.”
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"We all knew if she had it that she’d be surrounded with people who loved her whatever," Simon said.
As it turned out, Alice was born with a milder form of Treacher Collins syndrome than her dad. Alice has full cheekbones and only a slight gap below her eyes, which makes her lower eyelids somewhat droopy.
She has a full chin and, her parents say, a beautiful smile.
While their community has shown acceptance and support for the family, Simon, Vicky and Alice still face unexpected and hurtful derision.
"People literally stop dead in their tracks and point at her. Some have even said 'ugh' and laughed,” Vicky said “I get asked if I’m [Simon and Alice's caregiver], and they look shocked when I tell them, 'I’m his wife, and her mum.'”
“Some people,” she said, “are just plain nasty...One child took one look at Alice and called her a gargoyle."
The parents have no regrets about giving life to the girl who gives their lives meaning.
"The day to day life of Alice is amazing,” Vicky said.
"There’s nothing on this planet anywhere near as special as Alice,” Simon agreed. “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.”