Treacher Collins Syndrome affects one in 50,000 babies and is characterised by craniofacial deformities such as the absence of cheekbones.
The couple could have paid for treatment to detect and destroy any embryos carrying the gene, but they decided against it.
"Vicky said: ‘We knew there was no guarantee how bad the TC would be, if the baby would have it at all. It could have been as minor as a slight hearing problem, to being born with no face whatsoever. It was 50/50. 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.’
Treacher Collins Syndrome affects one in 50,000 babies and is characterised by craniofacial deformities such as the absence of cheekbones.
The couple could have paid for treatment to detect and destroy any embryos carrying the gene, but they decided against it.
"Vicky said: ‘We knew there was no guarantee how bad the TC would be, if the baby would have it at all. It could have been as minor as a slight hearing problem, to being born with no face whatsoever. It was 50/50. 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.’
But despite the trouble the couple has persevered and love their daughter no matter what.
"Vicky added: ‘People literally stop dead in their tracks and point at her. Some have even said “ugh” and laughed. I get asked if I’m their carer, and they look shocked when I tell them I’m his wife, and her mum. Some people are blissfully unaware of their own ignorance, while others are just plain nasty. Children are the worst because they just say what they see and don’t realise how mean they can be. One child took one look at Alice and called her a gargoyle.’
Culled from metro
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