#ThisStudentCan: Evie's Story

‘We thought that my daughter would never move, see or communicate, but today she can make jewellery using her hands and face to thread beads’

Evie Gilbert, now 18, was born with a rare condition called CHARGE syndrome and diagnosed as deaf and blind. Her parents were told by health professionals that Evie was unlikely to walk or communicate and would have a very passive life.

However, thanks to the support from both her parents and specialist education and care at Seashell Trust, Evie now walks, communicates and makes jewellery, despite her health complications and disabilities. Evie uses her face to help her thread beads that she can’t clearly see due to her partial vision, showing determination and strength which her father, Paul, describes as a ‘miracle’.

Seashell Trust provides education and care via its specialist school, college and residential homes for children and young people with complex learning disabilities. Based in Stockport, the national charity prides itself on helping these individuals develop through creative and exploratory education.

CHARGE is a complicated genetic syndrome and babies born with it suffer life-threatening birth defects. In Evie’s case she almost died several times and underwent serious medical procedures, including one operation to remove an extra artery that was wrapped around her windpipe, restricting her breathing.

Evie’s parents, who were both nurses, did everything they could when Evie was born to make sure that she was comfortable. At first they thought that she would never develop educationally, or even walk, until one day at about six months old she reacted to the flash of a camera.

Paul, who’s 68, said: “We knew from the moment she reacted to the camera that she had some vision. 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.

“When my wife, Kathy, was diagnosed with terminal cancer ten years ago, she was determined to make sure that Evie had a future, so we came to view Seashell Trust, where there were care and education services specially for children like Evie with complicated disabilities and communication needs.

“It wasn’t an easy decision moving Evie into residential care but it was honestly the best thing that we did for her. During her time at Seashell, she has learnt to walk independently and communicate through communication tools such as picture books.”

Sadly, despite surviving her initial diagnosis, Evie’s mum died three years ago on Evie’s birthday.

Paul continued: “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.

“Seashell then set up an opportunity for Evie to go into a charity shop over the course of 8 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.”

Evie is set to undergo more work placement opportunities with Seashell Trust, which is running a work experience focus campaign called ‘This Student Can’ to encourage more businesses to give those with disabilities and communication needs opportunities.

Anne Gough, Head Teacher at Seashell Trust’s Royal School Manchester, said: “The determination we’ve seen in Evie as she’s grown physically and mentally over her time here has been inspirational.

“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. We’re also showing businesses that they should consider giving placements to young people with disabilities, as it’s an opportunity that both can gain something from.”