Lucy’s story

Congratulations to Lucy Pearson who completed the Great North Run yesterday. Lucy took on the Great North Run for her son, Peter, who has epilepsy. The day of the run marked exactly seven years since Peter’s first seizure.

“Peter was 8 years old when he started having seizures. His first seizure happened one evening as he was coming home from Cubs. Peter and his dad, Paul, pulled up in the car at home and Peter said he couldn’t see the door handle and didn’t know how to get out of the car. We’ve since learnt that distorted vision is one of the first signs Peter has when he is having a seizure. He came into the house feeling quite disorientated, then his eyes rolled, and he became unresponsive for about 15 minutes. It was terrifying. The paramedics and hospital staff were fabulous. Peter went on to have another seizure a couple of weeks later and was diagnosed with idiopathic generalised epilepsy.”

“Over the years we’ve had some periods where Peter’s seizures were well controlled, but in the past year his seizures have increased, and he is having 3-4 prolonged seizures a week. This has had a massive impact on school, with peter missing most of year 10 as he rarely makes it through a full day. He then has the tiredness that follows, and this can impact him throughout the week.”

“One of the biggest hurdles we’ve had to overcome is finding the right treatment. We still aren’t there yet and Peter has had a tough year. School has been a big challenge for Peter as so many of his seizures happen when he’s in school. There have been times when he’s felt anxious about how other pupils will respond to him, but he’s been very fortunate and has a great group of friends. The school has been great and I cannot fault the care Peter has been given when he has a seizure. One of the staff team who looks after him is even doing the Great North Run for Epilepsy Action too this year!”

“As a family we have learnt to live with Peter’s epilepsy, but it is a consideration in everything we plan. Peter has two younger brothers, John and Luke, who are fantastic. They help to look after Peter when he is unwell and never grumble if our plans have to change because of a seizure. They just take it all in their stride. Peter makes me so proud every day. He deals with his epilepsy with such grace and courage. He rarely complains and never lets his epilepsy stop him from doing what he wants to do.”

“We have a fabulous support network in our family and friends, and we are very lucky to have a super epilepsy nurse who is always willing to listen and guide us. When Peter was first diagnosed, the Epilepsy Action website was so helpful. Our knowledge of epilepsy was limited, and the website had so much information that helped us to understand what was happening. In those early hospital appointments, I’m not sure how much we took in. But having a website to read and digest in our own time was great.”

“I’ve run the Great North Run for Epilepsy Action before, the first time in 2016 and then again a couple of years later. I’m not a very good runner and I’m not very fast, but I’m passionate about raising awareness of epilepsy. As a parent I often feel a bit helpless. I can’t change this for Peter, but I can try to make his life a little easier by helping to raise awareness. This year was particularly emotional as the race was 7 years to the day from Peter’s first seizure. He is my motivation. When I found the run tough, I reminded myself that my one day of pain is nothing compared to what Peter deals with. If he has the courage to face each day head on, then I can do a run!”

You can donate to Lucy’s fundraiser here: www.justgiving.com/Lucy-Pearson17