Inspirational gymnast

Edwards’ Syndrome

A little girl who doctors expected to die during birth because of a condition which causes severe limb disfigurement has amazed her parents – by starting gymnastics lessons.

Emma-Grace Andrews, six, was born with rare arthrogryposis which caused tissue surrounding her joints to fuse, preventing her from bending her arms and causing her legs to curve outwards.

Her mother Rachel, 43, who was told Emma-Grace would almost certainly die during or soon after delivery, refused to consider an abortion in her determination to allow her daughter to live as full a life as possible.

Incredibly, this year Emma-Grace celebrated her sixth birthday and six months ago even started gymnastics lessons alongside her little sister.

Mrs Andrews, a former drug and alcohol service family worker, of Llanelli, said: “Before Emma-Grace was born I was told she would have fixed limbs but I didn’t realise what that actually meant until I saw her in the delivery room.

“It was a massive shock when she was born. Her arms were rigidly straight. Babies normally curl up into a ball. She couldn’t do that – her legs looked like frog legs.

“The moment she walked on her own for the first time was absolutely amazing. I thought she would never be able to feed herself, let alone join other children at gymnastics class.”

Mrs Andrews’s pregnancy with Emma-Grace, her second child with husband Alan, 51, was problem-free until a scan in the 20th week of pregnancy revealed her daughter’s legs were bent outwards.

She said: “We were sent to the University Hospital of Wales in Cardiff where doctors decided Emma-Grace probably had Edwards’ Syndrome. In an instant, our world crumbled. We were devastated.”

Edwards’ Syndrome, a genetic condition, is frequently fatal. Nearly three-quarters of children born with it are either miscarried or stillborn, and those that do survive will be left severely developmentally disabled.

Mrs Andrews said: “We were given very little hope. I was faced with having to carry Emma-Grace for another 20 weeks, knowing that she almost certainly wouldn’t survive.

“The only way I could cope was to carry on as normal. I bought clothes and gifts, ready to be there for her after she was born. I refused to accept that things were as desperate as we were being told they were.

“Although it wasn’t explicitly suggested I have an abortion – the decision we faced was always there, in the background. The midwives and doctors were very matter-of-fact about our situation, almost clinical.

“We are a Christian family and termination was never an option for us. We knew we were going to have Emma-Grace no matter what. As soon we made our intentions clear, then the staff softened up and we felt as if we got more empathy.”

Little Emma-Grace was born via Cesarean section on May 16th 2008.

Mrs Andrews said: “If I’d had a natural birth it would either have killed me or her. Babies can naturally flex and scrunch up during delivery – she couldn’t do that because her arms couldn’t bend, so anything other than a Cesarean would have been catastrophic.

“She didn’t cry for a few seconds after she came out. It felt like forever, even though in reality it was a very short space of time.”

Four days after the delivery, genetic tests revealed Emma-Grace did not have Edwards’ Syndrome after all, but rather arthrogryposis, which had caused the connective tissues around her joints to fuse in place, severely restricting movement.

Only around 260 children are born with the condition each year in the UK. It is unknown what caused it in Emma-Grace’s case.

Mrs Andrews said: “From the time she was a few months old, Emma-Grace was constantly being fitted for plaster casts to try and straighten out her legs. Progress was often slow.

“We eventually found a walking aid, which was especially designed for disabled children, in the shape of a horse. She absolutely loved it, and named it ‘Sausage’. It was completely life-changing for her. Suddenly, she was mobile.”

After Emma-Grace was fitted with double leg splints in the winter of 2011, she amazed her parents by standing up and walking for the first time.

Mrs Andrews said: “She stood up against the couch and said ‘mummy, look at me’. Then she toddled over to me. I was overwhelmed – it was an amazing moment, one we never thought we’d see.

“I hoped beyond hope that my little girl might be able to walk into class on her first day at Pentip Primary School, and that’s exactly what she managed to do.”

Six months ago, Emma -Grace, supported by her brother Jordan, nine, joined her little sister Rosie, four, for one-to-one classes at Llanelli Gymnastics Club.

Mrs Andrews said: “She absolutely loves it, and seems just as capable and energetic as all the other children in the class. The leaders at the class don’t recognise her as disabled.

“She does exercises, goes on the trampoline, and does routines with balls. She doesn’t let anything hold her back at all. I’m so proud of her. She’s the happiest little child I know.

“She also loves swimming and takes part in the drama shows at school, getting up on stage in front of hundreds of parents. I’d be terrified swimming if I couldn’t move my arms, but it doesn’t faze her at all.

“Her hands are twisted but she’s got the most beautiful handwriting. I’m astounded by her tenacity and her love for life. She brightens everyone’s day – that’s just her nature.”

Mrs Andrews is now searching for help to provide Emma-Grace with an outdoor version of the horse mobility aid which will allow her to join her brothers and sisters for day trips to the beach.

She said: “I want a company to talk to me about what sort of equipment we will be able to provide her. We love going on the beach but her wheelchair won’t go on there at the moment. We want her to be able to play in rock pools and get down to the beach without her splints.

“Over the last six years she’s achieved everything we could only have dreamed of. She’s an ordinary girl finding extraordinary ways to do normal things.”

More high resolution pictures are available on request. To discuss rates for using pictures and copy, contact news editor Tom Knight on 07815 004413 or tom@medavia.co.uk.

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