Rich and Mike’s story

Rich and Mike Stevens have been given an Epilepsy Star award for their outstanding fundraising efforts and awareness raising. The brothers are taking on an epic Ironman challenge on 11 June to raise money for Epilepsy Action following Rich’s son’s diagnosis of Lennox Gastaut syndrome last June. They have already raised the huge amount of £11,000. Rich shares their story.

“Until the age of three and a half, Ralph showed no signs of epilepsy or anything similar. He was a perfectly happy and healthy boy when one day he suddenly had a tonic clonic seizure and was taken to hospital.”

“He was then fine for about two weeks until the same thing happened again. It then happened five days later and from then it was happening multiple times each day. Since then, we’ve been on a hellish journey of navigating Ralph’s epilepsy.”

“Lennox Gastaut Syndrome is a rare and severe form of epilepsy that involves lots of different seizure types and it progressively gets worse. Ralph primarily has atonic and tonic seizures which see him fall to the floor and injure himself.”

“However, epilepsy is not just seizures. For Ralph it seems his energy levels have dropped, his coordination has deteriorated, and his development has regressed. Since he was diagnosed a matter of months ago, all aspects of Ralph’s life have been affected by epilepsy.”

“Since the diagnosis there have been many practical challenges to keeping Ralph safe and maintaining his medicine routine. He was recently started on the ketogenic diet which means we have to be very strict and careful with his food and drink.”

“We also have to make sure that someone’s with Ralph all the time in case he has a big seizure. Ralph’s mum has had to cancel her return to work to make sure she’s near nursery, as they often call when he has a seizure or a fall, and to keep him safe at home.”

“However these practical challenges are outweighed by our worry and concern for Ralph’s future. We, like every parent in this situation, want to know what is going to happen. Will it get worse? Will he grow out of it? Will it affect his learning? Will his behaviour return to normal? We’ve been told all these things could be possible. Whilst we try and continue with life as much as we can for now, we have this dark cloud of worry above us.”

“Ralph is an absolute warrior. He’s been through so much this year and he continues to smile, play and enjoy life. He’s had so many tests and has never complained. He continues to play despite bandages, bruises, cuts and lumps all over his body.”

“He’s had multiple EEGs with cables glued to his head and now has a protective helmet which he wears with a smile. Because of his ketogenic diet we’ve had to explain to him that he can’t have certain foods and he has even taken that in his stride. He used to enjoy donuts and at the shop he asks to buy them but then he says ‘not for me, they’re just for Lilly (his younger sister).”

“We are mega proud of Ralph for hundreds of reasons but in particular for his incredible strength and huge heart.”

Inspired by Ralph’s warrior-like attitude, Rich and his brother Mike wanted to follow suit and take on their own warrior challenge. Rich said;

“The ironman is a 1.9km swim, followed by a 90km bike ride and a 21km run.

Inspired by Ralph’s warrior-like attitude, Rich and his brother Mike wanted to follow suit and take on their own warrior challenge. Rich said;

“The ironman is a 1.9km swim, followed by a 90km bike ride and a 21km run. We wanted to do something that was super tough and something that felt impossible at the time of starting. Neither me nor Mike could swim properly or had ever even sat on a road bike eight months ago.”

“We train up to 14 hours a week and have had to overcome injuries, fatigue and have had to fit this all in around family and work life. We’re now less than two weeks away and cannot wait for the big day. The training has been long and tough, but the support has been tremendous and has kept us going.”

Accepting the award, Rich said:

“Receiving this recognition is an extra boost in morale and motivation for me and Mike. Our family has had such a tough year and so we all really appreciate the positivity and support.”

“People have been tremendously supportive of our fundraising challenge and receiving this award is just the cherry on top. Thank you to Epilepsy Action and to everyone who has been part of this journey. Bring on 11 June!”