Losing her older brother to Sudden Unexpected Death in Epilepsy (SUDEP) left a huge hole in Emma Charles’s heart.
Simon Noble had a rare and severe form of epilepsy called Lennox-Gastaut syndrome, and a severe learning disability.
Emma knew she needed to do something to help others when he passed away aged 30, and enrolled on De Montfort University Leicester’s (DMU) Nursing with Registration (Learning Disability) degree.
Now about to start her final year, Emma’s experiences have given her comfort.
Her placements have confirmed that working with young people with epilepsy and associated conditions is the direction she’d like to pursue when she graduates next year.
Emma's brother Simon Noble
Emma said: “The course has provided me with comfort and makes me feel he is always there.
“If I hadn’t done this, I don’t know what I’d have done. It has made me the best person I can be.
“Simon had minimal verbal communication skills; however he was able to express his needs by means of body language. Having a close bond meant my family and myself were able to recognise his needs.
“Growing up I was always protective of him, I remember the hurtful comments too well. Simon was a human, a son, a grandson and a brother; therefore he deserved to be treated with respect. He was not different, he was purely unique.
“Simon loved the TV show Rainbow, the ice cream van and Santa Claus films – he’d watch them all year around. He loved his nieces and nephews and liked listening to his music, Agadoo and Jingle Bells were his favourite.”
Then four years ago Simon tragically lost his life to SUDEP.
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Emma said: “As a family we were not made aware of the severity of SUDEP. The loss of my brother not only left a big hole in my heart, it made me realise that no family should have to go through all the obstacles in life like we did.”
A qualified nursery nurse, Emma took an access course in her home city of Nottingham before applying to university. She’d originally hoped to study nursing when her children were older.
She said: “I chose DMU because it had a nice feel to it and the staff gave you more advice and details.
“I love the course – I couldn’t think of doing anything else.”
Currently on placement at a care home in Nottingham, she has recently completed an elective placement at the Young Epilepsy charity in Surrey, which was “amazing” and “gave real insight”.
Emma, 33, added: “People with a learning disability and their families just want to be included. To do this they need somebody who is committed, somebody that cares, listens, shows compassion and has the courage to challenge others.
“I believe I am that somebody and hopefully can make that change to ensure individuals like my brother receive the best care possible to maintain quality of life.”
Posted on Wednesday 7 September 2016