‘I’ll tell her she’s beautiful everyday!’ : Father with severe facial disfigurement defends decision to have daughter with the same condition

April 28, 2015 | by | 0 Comments

A new dad with a severe facial disfigurement has defended his ‘cruel’ decision to have a baby daughter with the same condition.

Alice Moore, 13 months who was born with the rare disease Treacher Collins Syndrome - her father Simon Moore, 30 also has the disease (James Linsell-Clark / SWNS.com)

Alice Moore, 13 months who was born with the rare disease Treacher Collins Syndrome – her father Simon Moore, 30 also has the disease (James Linsell-Clark / SWNS.com)

Simon Moore, 30, has a classic case of Treacher Collins Syndrome which is characterised by craniofacial deformities such as the absence of cheekbones.

He is also profoundly deaf and spent much of his childhood indoors to escape bullies and still finds strangers pointing and staring at him.

But despite his own ordeal he and wife Vicky decided to keep daughter Alice when scans showed she also had the condition, which affects 1 in 50,000 births.

The couple underwent IVF to start a family and could have paid £9,000 for treatment to detect and destroy any embryos carrying the faulty TC gene.

But they decided against it because they could not afford a second course of IVF and daughter Alice was born in February last year.

Some neighbours have criticised them for their ‘cruel’ choice and one nasty child called Alice a “gargoyle”.

The youngster has a milder form of TC with full cheekbones and only the slightest gap below her eyes which makes them droop slightly.

She has a constantly runny nose but her chin isn’t receded like in the classic case of TC.

But she has a high palette meaning feeding times can be difficult and time consuming and Alice can end up hungry most of the time and wake up for a feed every hour.

She also has the typical malformed ears and has no hole into the inner ear and she is forced to wear a bone-anchored hearing aid.

That allows the vibrations to travel through the bones into the inner ear and it means instead of being completely deaf Alice can hear most things when it is quiet.

Despite the taunts Simon says he has never been happier – and will tell his daughter she is beautiful every day.

Simon, a stay-at-home dad, said: “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.

“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.”

Vicky, 36, who has three daughters aged 10, 13 and 15 from a previous relationship, said: “We didn’t go into this with our eyes closed.

“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.

“But 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. Simon has the ‘classic case’ and he’s amazing.”

Vicky was sterilised after her three previous children and was not allowed IVF on the NHS because she was already a mum-of-three.

(James Linsell-Clark / SWNS.com)

(James Linsell-Clark / SWNS.com)

Simon’s mum paid for the #6,000 treatment privately and the couple from Wymondham, Norfolk are paying her back in monthly installments.

The procedure at Bourn Hall Clinic, Cambridge was successful but a 16-week scan showed that Alice had inherited her father’s genes.

Vicky added: “I’d be lying if I said we weren’t disappointed.

“But after going through IVF treatment, and knowing the risks involved, we were just so delighted to see a heartbeat.

“We didn’t care about her TC – we fell in love immediately.

“We risked not having a baby at all by using the specialist method of IVF, but instead we have Alice.”

Simon says he still has to deal with strangers pointing and laughing at him and once on holiday a crowd even gathered to take pictures of him.

Vicky added: “People point and stare and Simon often gets funny looks when he walks  around the village with Alice.

“They think because of the way he looks he can’t, or shouldn’t be able to, cope with a baby.

“My neighbour 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.

“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.”

Alice is now being taught sign language by Simon, who has the same level of hearing as her, and mum Vicky.

The couple met five years ago at a sign language class when Vicky started fussing over Simon’s hearing dog Foggy and married in 2012.

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