Last year I wrote about Amy El-Keria who died sadly and unexpectedly in December. Amy was a young person with Tourettes who I’d met at a group meeting. She was found unconscious with a scarf around her neck in her room at a hospital where she was being assessed – she died the following day, aged just fourteen.
Amy had faced some big challenges in her short life and had suffered as a result of other people’s intolerance of Tourettes.
A few months after she died her friend Laura contacted me. Laura and Amy had met at school and become close friends. Laura missed Amy and wanted to do something positive in her memory. She told me she was going to organise an Awareness Day at her new college and asked if I would come and speak about Tourettes.
Today I did just that. Leftwing Idiot and I went to Laura’s further education college which is near Stroud in Gloucestershire, for the Awareness Day. It’s set in over 100 acres of beautiful grounds, which contains a working farm among other things. The atmosphere was warm and welcoming. It’s a specialist setting for young people with learning difficulties or other additional needs. All the courses they offer are practical and hands-on and most of them take place outdoors.
Laura had organised the day in partnership with Curtis, another student at the college who also had Tourettes. They’d done a brilliant job – they’d made stickers, written a leaflet, organised a raffle and a cake stall, and contacted local professionals and the local press. They’d made a display that explained the motivation for the day and shared Amy’s story.
The talk took place in a large marquee with sunlight pouring in through its open sides – and about a hundred people came to listen. Laura had thought of everything – she’d even organised the building of a special ramp so I could access the stage easily in my wheelchair.
The event started with a quick introduction from Laura, followed by a talk by Curtis. He gave a great speech about his tics and experiences. I was up next and very pleased to share my journey and explain why increased understanding of Tourettes can be a matter of life and death.
Laura had written a short message about Amy that I was privileged to read on her behalf. Here it is:
“Amy was a pleasure to have as a friend, she was kind, caring, and thoughtful of others – that’s why it’s so sad to know that not everyone was like this towards her. My beautiful friend ended her life last year after spending years feeling misunderstood and judged.
I remember her telling me that she often felt out of place. I now know I’ll never see Amy again and it breaks my heart. I wish I could have been there for her more. I’m doing this day in her memory. I miss her so much. Not a day goes past when she’s not on my mind. So please take the time and try to understand people’s feelings. Goodnight Amy, sleep tight my angel, Ι love you.”
I echo Laura’s thoughts and I’m determined that increased understanding and thoughtfulness will be part of Amy’s legacy.
I felt heartened by my visit to the college. It was great to see a place where young people are being educated and supported through the challenges they face, in a holistic and person-centred way. It’s only sad that this approach isn’t one all young people get to experience.
Laura and Curtis raised nearly £250 which will be split between the college and Touretteshero. Thank you to everyone who helped make the event possible.
Laura, it was an incredible day and I’m sure Amy would be extremely proud to see what you achieved in her memory.