Jack had his first seizure when he was eight-years-old and his mum Louise describes it as a terrifying experience: "It happened in the middle of the night and came completely out the blue. We had to call an ambulance and it took the team at the hospital over an hour to get things under control. It was a huge shock for all of us and we had no idea if it might happen again."
Another big seizure just a few months later led to Jack getting diagnosed with epilepsy. He started a course of medication which initially brought the fits under control.
Growing up with severe epilepsy
However, as Jack reached puberty the medication seemed to stop working so effectively and he started to regularly suffer severe seizures. By the time he turned 11 Jack was having at least three a week. The severity of Jack’s epilepsy was proving hugely detrimental to his day-to-day life; the seizures would not only happen without warning, wherever he was whether it be at school, at home or out in town, but they would also leave Jack feeling completely exhausted.
Jack’s doctors tried five or six different courses of medication but none of them stabilised his condition and so aged 15 he was referred to Great Ormond Street Hospital (GOSH), the largest childhood epilepsy surgery centre in the UK, to see whether brain surgery might provide the solution. Neither Jack nor his parents were aware that surgery could be used to treat epilepsy, and so the news that this might be an option caught them by surprise. Jack said "My mum joked that they would have to find my brain first!"
Brainwaves and videogames
To assess whether surgery was a viable option, Jack was admitted to Koala ward and gradually taken off his medication over several days so that his brainwaves could be monitored during seizures. It only took 24 hours for the first significant seizure to happen. This telemetry monitoring allowed the clinical team to pinpoint exactly where in Jack’s brain the seizures were coming from. Jack’s mum Louise was able to stay on the ward with him throughout, while Jack tried to keep himself entertained by playing Fifa and F1 video games.
With the results analysed, Jack’s consultants then asked him if he would consider a major procedure known as a hemispherotomy to disconnect the damaged left side of his brain. This surgery stood a 60% chance of dramatically reducing or even stopping Jack’s seizures. However, it also meant Jack would be certain to lose his peripheral vision and the muscle weakness he already experienced down the right side of his body as a result of cerebral palsy would deteriorate further.
Surgery: the pros and cons
After talking through the benefits and risks of surgery with GOSH neurosurgeon Martin Tisdall, Jack returned home to carefully weigh up his options with his mum Louise and dad Paul. They were all mindful of how the side-effects of the procedure could prevent Jack taking part in his favourite hobby – karate.
After careful consideration, Jack decided not to proceed with the surgery: ‘All the doctors were very helpful in laying out all the facts with the pros and cons so I could reach a decision. In the end I decided missing out on the things I love like karate was too much of a risk. I’m not going to let epilepsy stop me from doing anything.’
While the option for surgery remains open for the future in case the impact of seizures on Jack becomes too great, Jack has stayed true to his word and not let epilepsy stop him from doing anything. He currently balances attending college with a part-time job in a local supermarket at the weekends, while in April this year he obtained his black belt in karate after a lot of very hard work.