Sophie's story

Recalling the time when her daughter Sophie’s seizures first began, mum Anne says: “Sophie first noticed something unusual happening when she was cross country running aged 11. She had to stop. Her eyes turned towards a tree and she couldn’t turn them back. She saw only black.”

Similar episodes followed so Anne took Sophie to see a neurologist. After numerous tests, Anne and husband Andrew were told it was likely that Sophie had epilepsy. Medicine was effective at first but, sadly, Sophie’s seizures became worse. They happened without warning, leaving her vulnerable to serious injury. Her parents needed to be constantly watchful. And if Sophie missed her medication, she would have up to a dozen seizures a day.

Aged 13, Sophie was referred to a specialist unit to see if surgery might help and years of distressing tests and hospital stays began. Eventually it was discovered that part of Sophie’s brain was not working properly due to a condition called cortical dysplasia, which Anne describes as ‘a bit like a birth mark on the brain’.

The prospect of brain surgery was terrifying – but, after much research, the family discovered that, at King’s College Hospital London, doctors were using a precise, two-stage electrical stimulation technique to identify the exact area of the brain requiring treatment.
 

Sophie - pictured here just before her 'awake' brain surgery - was treated by the team with results that her mum describes as ‘amazing’. Sophie became completely seizure free straight away. Although she endured a tiring and painful six month recovery, she went on to study for her ‘A’ levels and was able to enjoy life as a party-loving 16-year-old.

Now, five years on, Sophie's life is transformed. She says: "I can't express how thankful I am to have been given such an amazing surgery funded by Action Medical Research. If it wasn't for medical research I may well still be suffering from epilepsy or have had fundamental paralysation. It really does show how much quality of life can be changed by medicine!! Thank you."
 

Sophie is now now studying History and Politics at the University of Manchester and looking at getting a first.

She reflects: "Had someone told me that this would be my life now I don't think I would have even been able to visualise it. Just the simple things like walking up stairs without being anxious that someone wasn't behind me to catch me are amazing. Last year I travelled to 30 different countries (some solo and some with my friends) which just proved quite how life changing my treatment was."

Find out more about the research that Action has supported here and read more from Sophie over on our blog.