Young Epilepsy helps children, teenagers and young people living with the condition”.
May 19-25 is National Epilepsy Week. David Ford, Chief Executive of the charity Young Epilepsy, talks about the devastating effect this little known condition can have on a young person’s life.
Epilepsy can affect every aspect of a young person’s life; their education, mental health and even the ability to form relationships.
This would be tough for an adult. It’s tougher still if you’re one of the 112,000 children, teenagers and young people in the UK living with epilepsy. Imagine growing up while dealing with a condition that’s widely misunderstood, even by many medical professionals. At Young Epilepsy we hear of young people waiting years for a diagnosis or being ostracized at school because staff don’t know how to deal with the condition.
I recently heard a particularly sad story involving a young woman called Nikey Robinson. Diagnosed with epilepsy at the age of seven, she could have 200 seizures a month and went to a residential special school at the age of 13.
Nikey was eventually prescribed medication that reduced her seizures to around 10 a month. She was doing well living in assisted accommodation but it wasn’t to last as Nikey died during a seizure, a rare condition known as Sudden Unexpected Death in Epilepsy (SUDEP).
Nikey’s mum, Caron, picks up the story: “Despite years of administering emergency medication to stop the seizures, Nikey lost her life to SUDEP on 21 March, 2013. This time it was silent and motionless. The seizure alarms fitted to her bed were never set off. I found her in the morning. She had passed away although it looked like she was asleep”
Caron and her family are strong and have come together following their personal tragedy. They’re putting their energies into raising funds to support epilepsy research.
“It’s our way of turning this into a positive. Epilepsy had a devastating effect on her social life as she lost friends and her education suffered greatly. Despite this she knew what she wanted and was a positive person, always living life to the full.”
This is despite years of battling to get even the most basic care for Nikey. As Caron explains:
“Over 16 years we had to fight for everything. We had to fight for her place at the specialist school she attended, her assisted living accommodation; even a blue badge for parking”.
Although SUDEP is rare, every other aspect of this story is typical of the fight families have when they have to care for a child with epilepsy. That’s where Young Epilepsy comes in.
We help families like the Robinsons. We operate a helpline and information service and provide epilepsy training for parents, carers, health and education professionals. We also run parent and carer support groups, fund research and operate St Piers school and college which provide education services for children and young people with complex epilepsy and related conditions.
If you care for or know of a young person with epilepsy, please visit us at youngepilepsy.org.uk We’re also at Facebook.com/youngepilepsy and Twitter @youngepilepsy
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