Evie’s life of defying the odds
EVIE Gilbert 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, 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.
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.’
She has refused to allow her partial sight to hinder her creativity.
“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,” said Paul, 68.
“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.
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.
“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,” added Paul.
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 opportunities to those with disabilities and communication needs.
“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.
Find out more about the Seashell Trust at seashelltrust.org.uk
Evie Gilbert’s father Paul