My little sister Jennifer suffered from epileptic seizures pretty much from birth. When I was called over by a teacher during school I learned to expect the worst, finding out my parents were once again at her bedside in Royal Berks. It came to the point where her violent convulsions were normal near-everyday experiences. 

On 1 July 1995, aged 19 months, she went into status epilepticus – a generalised tonic-clonic seizure which is a medical emergency after just five minutes. Jennifer was convulsing constantly for 1h 45. Doctors told us she wasn't likely to survive the night, something they wouldn't tell frightened parents unless they were 99% sure it was going to happen.

Today the poor little toddler who spent eight weeks in hospital and ICU - in addition to permanent brain damage and six months of blindness - is 25 years old and living life to the full at a residential home for special needs people.

In 2010, eight years after Jennifer's last seizure, I was studying at university when I started having  'episodes' I couldn't describe. These felt like a literal brainwave and left me feeling confused, weak, drowsy and often nauseous. Two years later, after various tests including MRIs and EEGs, I myself was also diagnosed with epilepsy. Since then I have tried two different medications and continued to have focal, atonic and myoclonic seizures, auras, as well as suspected tonic and absence seizures. The postictal (recovery) stage of these is often as bad as the event itself. I kept all this a secret from most people for eight years for fear of backlash (which did happen in a few cases), so to say this disease has taken its toll on me and my family is the understatement of the century. As of today, my condition is still not fully under control and I am on a higher dose of medication than Jennifer. 

Two things I was initially told I could no longer do were running and cycling as they involved me being out alone. Take away my driving, fine, but I need to run and cycle to get about. I'm not letting this condition take over my life. By running the marathon I can prove that epilepsy does not have me, while raising money for an excellent cause very close to mine and my family's heart. 

EA's information was a great help to me when I was first diagnosed, and helped me come out of several years of denial that I was also suffering from the condition that had dominated my childhood and effectively stolen my sister. This support did not exist 25 years ago when my family needed it. Approx 500,000 people in the UK have the condition (1/100) and 60m across the world. I want to help ensure those that have similar experiences are not left alone in the dark any longer.