Couple who decided to have baby with Treacher Collins Syndrome describe themselves as 'fantastic parents'18 MAY 2015 02:02 PMBY NATALIE CORNER, JESSICA FLEIGSimon and Vicky Moore chose to have IVF without detecting and destroying embryos that had the TC gene

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Heartwarming moment Vicky and Simon describe themselves as "fantastic parents"

A couple decided against shelling out an extra £9,000 during their IVF treatment to test their embryos for a faulty TC gene.

Treacher Collins Syndrome can be detected during early stages of IVF but the couple could not afford a second round and chose to move forward without the test.

There was a 50 per cent chance of their baby being born with the syndrome.

The family spoke with Phil and Amanda on This Morning and said that having "fantastic parents" will help Alice when she grows up and that is was "natural" for any couple to want a child together.

Simon and Vicky Moore on This Morning with their daughter Alice

They hope to raise more awareness for the syndrome and the TC gene mutation.

Vicky explained that TC isn't always genetic and there's a possibility a fresh mutation can begin and families who were not expecting the syndrome could have a child born with it.

Simon explained how his parents never treated him any differently when he was younger and he would do the same with his daughter.

Alice was born in February last year with TC and mum Vicky explained how lucky their little girl is: "Luckily she has got cheek bones, so it's not too bad, and her jaw is lovely so she doesn't have breathing problems.

"Her nose and nasal passage is very small, which is why she snores. She'll have an operation to anchor her hearing aid into her skull, like Simon has just had done."

Vicky explained that it will be up to Alice in the future when she grows up if she wants plastic surgery on her ears.

Simon Moore hopes to raise awareness for Treacher Collins Syndrome

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

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

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

Vicky, 36, who has three daughters aged 10, 13 and 15 from a previous relationship, said in an interview: "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."

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

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.

Simon said 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.

I understand they wanted a child together it is only natural and IVF costs a fortune especially for those who find it a source to conceive.. What do you guys think of this? I looked it up after seeing something on Facebook

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