Sophie's story | Action Medical Research

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: “If we ever heard a bang or a bump, we’d shout Sophie’s name and start running. If she replied, we knew she was safe. If she didn’t, we just had to hope we reached her before she fell to the ground with a head injury or a broken limb,” Anne says.

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 was treated by the team with results that Anne describes as ‘amazing’. Sophie became completely seizure free straight away – and, although she endured a tiring and painful six month recovery, she is now studying for ‘A’ levels and enjoying life as a party-loving 16-year-old.

Action Medical Research is, together with Great Ormond Street Hospital Children’s Charity, funding medics at King’s College London who are refining the techniques which have, Anne says, freed her daughter from seizures and transformed her young life. Sophie explains in her own words the way her life has changed on the Action blog.

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