The September Star Award has been awarded to Pete Harris from Bromsgrove for his incredible fundraising and awareness efforts, following the death of his brother Matt. Pete’s brother Matt passed away from SUDEP (Sudden Unexpected Death in Epilepsy) in 2021. Matt’s death was devastating for his family and significantly affected his older brother Pete. Despite facing the unimaginable, Pete turned his pain into helping others, raising over £7000 for Epilepsy Action so far.
Pete was nominated by his wife Sophie who says Pete’s efforts to raise money, awareness and ensuring Matt’s name lives on in a positive light had to be recognised. She tells the family’s story below.
“Pete is the oldest of three brothers – Matt is in the middle and Joe who is the youngest. Pete and Matt are the closest in age, but they were all very close. All the brothers would sit in their own rooms playing Call of Duty, shouting at each other across the corridor when one of them would win or lose.
“Matt loved food and was always the one in a restaurant who would pick something obscure to try! Mine and Peter’s daughter’s favourite game is playing eat a donut without licking your lips, because that’s something Uncle Matt used to play!”
Matt’s epilepsy story
Sophie continued: “Matt had his first seizure at 14 years old. At the time, this was a one-off, so he was initially advised that it was heat exhaustion or overtiredness. Around four to five years later, he then began having seizures at night time and eventually these began to happen at any time of day.
“Matt struggled to accept his diagnosis, because he felt it stopped him from doing some of the things he wanted and liked to do. Taking medication was a challenge for him and he often felt like nobody understood him.
“The family spent many years going to different appointments with him, talking to him about his diagnosis and his treatments. His mum was his biggest support throughout it all accompanying him to different support groups, encouraging him to meet new people and try new things.
“Matt joined a local Epilepsy Action Talk & Support Group in Wolverhampton which enabled him to meet more people who had epilepsy as well. He went to the fete locally where they were fundraising and he joined a day trip on a local canal boat with his mum. He had lost some of his confidence by the time he went so would have benefitted from earlier input in these groups.
“Other men’s mental health groups run by other local organisations were also integral to helping during and post COVID.
“In 2021, Matt died from SUDEP. He was just 33 years old.”
“Not all those who wander are lost”
Matt’s death was devastating for the family. For Pete, it changed his life forever.
Pete explained: “After Matt died the grief initially was very overwhelming – he was so young and it felt like it could have been prevented. I started fundraising in 2022, initially by hosting a fishing tournament in Matt’s name. Matt and I had started fishing together during COVID when social distancing was around, but you could meet outdoors. Matt felt isolated during this time, so it was a way to help boost him and stay in touch. This fundraiser is always a favourite of mine and a way to meet up with family.
“I have a tattoo in memory of Matt – it reads “Not all those who wander are lost”.
“I have always enjoyed running and after Matt died it was good for my mental health, somewhere I could release some of my emotions. I applied for the London marathon and got a place, so I decided this also needed to be in Matt’s name! I ran the London marathon in my Epilepsy Action T-shirt with Matt’s name on my back.
“The Snowdon marathon at the end of October is my next challenge. I am always on the lookout for what’s next.
“I don’t think people are aware that you can die from having a seizure. Traditionally, people are aware of the seizure part but not that it can be fatal, particularly if not managed properly. Also, people don’t understand the aftereffects physically for Matt – he would struggle for days after a fit which in particular applies to employers who would often disregard him or end his job because he needed time off to recover post fit.
“I also think that people should know it can have a huge impact on your mental health as well as your physical health and sometimes this is not recognised or supported in the same way.”
Live on in a positive way
Speaking about the impact of Matt’s death on the family, Sophie said: “Matt’s death affected the whole family. In particular, Pete was affected and initially couldn’t see a way out.
“He then decided to honour Matt by raising money in his name for Epilepsy Action, as he wanted to help support others that might be going through similar difficulties with their diagnosis, and hopefully prevent further tragedies.
“Pete has now run the London marathon, multiple ultra-marathons and hosts a yearly fishing event. It’s been five years since we lost Matt and Pete has now raised over £7000.
“The whole family has continued to support Pete throughout his fundraising journey, and everyone is so proud that he has turned a tragic family event into something positive. Matt always looked up to his big brother, and we know that he is always cheering him on – and sometimes laughing at him and his crazy challenges!
“Pete – despite the loss of Matt which has totally changed our lives, you’ve been determined that his name will live on in a positive way. You’ve continuously challenged yourself to help others and we are all so proud of you and know Matt would be too!”
Celebrating Pete with the September Star Award
Rebekah Smith, chief executive at Epilepsy Action said: “We’re honoured to give this month’s epilepsy Star Award to Pete for his incredible fundraising efforts. To turn something so devastating into helping others is truly inspiring, and the money raised by Pete will have a direct impact in helping the charity to deliver their support services to those who need it most.
“Matt’s story is particularly hard-hitting as we approach SUDEP Awareness Day in October. Every day, three people with epilepsy will die from either SUDEP or related causes. These are people with families, friends and whole lives ahead of them – they should still be here.
“We hear all too often that people with epilepsy aren’t told about the risks of SUDEP, and the importance of managing the risk factors surrounding it. Epilepsy Action are campaigning for everyone living with epilepsy to learn about SUDEP, know the risks and feel empowered to best support themselves. We’re encouraging open conversations between clinicians and their patients, people living with epilepsy, their families and friends, as well as within the wider epilepsy community.
“We are so grateful for Pete’s fundraising efforts and support, and his family’s bravery in sharing their story. We hope that Matt’s story sheds light on the impact of SUDEP, and why having these difficult conversations is so important. Pete – we know Matt would be proud of you.”
You can follow or donate to Pete’s fundraising here.
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