• Evie was never expected to see, hear or walk - this is the amazing way she's defied the odds

    November 25, 2019 | Blog | nvziy
  • “We had never given up on her, and she never gave up either – she’s been determined to live since the day she was born”

    Evie Gilbert has been defying the odds her entire life she is a remarkable young woman who has been defying the odds her entire life.When she was born, her parents Paul and Kathy were told she was deaf and blind, unlikely to ever walk or communicate and would have a very passive life.The 18-year-old has a rare genetic condition called CHARGE syndrome, which causes life-threatening birth defects.

    Evie almost died a number of times and needed surgery to remove an extra artery that was wrapped around her windpipe, restricting her breathing.But Paul and Kathy, who were both nurses, were determined to do everything they could to help Evie thrive.They soon discovered she was capable of far more than anyone could have predicted for her. 

    The couple realised Evie must have some vision and hearing when she was around six months old, after she reacted to the flash of a camera and was startled by a noise on television.In the years that followed, Evie has gone from strength to strength.Not only has she learned to walk, but she can also  communicate with those around her using picture books.  

    And incredibly, after developing a passion for art, Evie now makes her own jewellery, showing determination and strength which Paul describes as a ‘miracle’.Paul and his wife Kathy were told their daughter would never walk or communicate – she proved everyone wrong ,She has refused to allow her partial sight to hinder her creativity.”We knew from the moment she reacted to the camera that she had some vision,” said Paul, 68.”Soon after that day we had the TV on really loud and she startled at the sound of an explosion. Suddenly, we knew she must have some hearing too.

    “We had never given up on her, and she never gave up either – she’s been determined to live since the day she was born. “Since then we’ve always helped Evie to learn, and we had our own way of communicating with her at home”.Ten years ago, Kathy was diagnosed with terminal cancer.

    She was determined to make sure Evie had a future, so the couple decided to look into the Seashell Trust in Stockport.The charity provides education and care via its specialist school, college and residential homes for children and young people with complex learning disabilities.Paul says it wasn’t an easy decision to move Evie into residential care, but she has made incredible progress in her development and education with Seashell.

    Sadly, despite surviving her initial diagnosis, Kathy died three years ago on Evie’s birthday. Paul says his wife would have been delighted to see how much Evie has achieved.She recently had the chance to go on a work experience placement at a charity shop – where her handmade jewellery went on display.

    “After showing an interest and passion in art class, Evie’s teacher and learning support assistant helped to find her creative streak and before I knew it, I was being told Evie was making jewellery – which was just amazing to hear,” added Paul.

    “Seashell then set up an opportunity for Evie to go into a charity shop over the course of eight weeks, for an afternoon a week and she thrived doing it.

    “She sat making jewellery in the shop, displaying pieces she’d previously made – I couldn’t have been prouder, and I know my wife would have been so pleased.”Despite her parents being told she’d have a ‘passive’ life, Evie has thrived.Evie is about to embark on more work placements, as part of Seashell’s work experience campaign, ‘This Student Can’.

    It aims to encourage more businesses to give those with disabilities and communication needs opportunities.A rare condition makes Beth fall asleep for months on end. Now a devastating disorder could dislocate her neck or cause a stroke at any time.’I just stayed on the floor for three hours’: What it’s like to have a stroke at 23

    “The determination we’ve seen in Evie as she’s grown physically and mentally over her time here has been inspirational,” says Anne Gough, head teacher at Seashell Trust’s Royal School Manchester.”The staff here have worked hard with Evie, as we do with each student, to tailor an education and care plan that has helped develop her communication skills, creativity and overall well-being.

    “As part of our post 16 and work placement programs we’re helping our students gain skills for life that will help them to become active members of the community.

    Thanks to The Manchester Evening News for the post:- https://www.manchestereveningnews.co.uk/news/greater-manchester-news/doctors-said-evie-would-never-17226426