April’s Epilepsy Star award has gone to seven-year-old Tyler Hartley, for his strength and resilience throughout his difficult battle with epilepsy. Tyler, who is also autistic and non-verbal, was diagnosed at just four years old. Last year, his family were told he is living with a rare epilepsy syndrome, Lennox-Gastaut syndrome. Tyler’s mum says despite difficulties he faces every day, he always finds a way to smile.
In June 2023, Tyler was diagnosed with generalised epilepsy at just four years old. “His diagnosis came following a tonic-clonic seizure out of the blue. He’s tried multiple medications, but is drug-resistant. He has seizures every day and they range from tonic clonic, tonic, abscences, atonic, focals and more.
“Finding out Tyler was drug-resistant was devastating for us as a family. His future became so uncertain. He is at the highest risk of SUDEP (Sudden Unexpected Death in Epilepsy) due to uncontrolled seizures. He’s on multiple medications everyday just to give him the best chance against SUDEP.
“Tyler has seizures throughout the day and night. There is no break from it. This affects his attendance at school significantly, as he often requires additional rest days to recover and regain his strength.
“He is also autistic and non-verbal which makes it very difficult for us to communicate with him, or for him to tell us what’s wrong or how he’s feeling. He needs watching 24/7 and has no awareness of danger. Our family and I have adapted in order to meet his needs and keep him safe every day. His big sister Leah is amazing – she is 15 and they are the best of friends. It’s a beautiful bond.
“Tyler has had MRIs, EEGs, regular blood tests. As he doesn’t understand communication, he doesn’t understand what’s happening. This does tend to upset me because it causes him so much distress but he always manages it all so well and takes it in his stride.”
Lennox-Gastaut syndrome
Rebecca continued: “Around 12 months ago, Tyler was further diagnosed with Lennox-Gastaut syndrome. Despite facing daily seizures, regression, and the impact of brain damage, Tyler continues to show incredible strength and resilience. As a family we are so, so proud of Tyler.
“Lennox-Gastaut syndrome is a devastating and cruel condition and I am watching the boy I gave birth to deteriorate in front of my eyes. Memories pop up on my phone of how he used to be pre-epilepsy and my heart breaks. However he’s so, so strong and resilient and even after a seizure he tries his hardest to stand up and carry on even though he needs a rest.
“His condition causes him to miss out on so much so it is particularly difficult at times. It is especially difficult because when Tyler is unable to attend school regularly, he misses out on many important and enjoyable aspects of his day. He misses participating in fun activities, taking part in soft play, and spending time with his friends, all of which are very meaningful to him.
“Despite these challenges, we feel incredibly fortunate that the school is so understanding and supportive of Tyler’s condition. It is a truly fantastic specialist setting, and we deeply appreciate the care and flexibility shown towards him.
“The support and knowledge from Epilepsy Action have also been amazing.
“Some days are harder than others, but we are just so happy he is here. That’s all we can ask for.
“He still finds a way to smile, and that smile means everything to me – it lights up any room and absolutely gets me through the day. He is obsessed with Peppa Pig and loves being on a trampoline!
“Tyler attends a fantastic special school with wonderful staff who know him so well and he absolutely loves school. He might not be able to talk or tell his needs but his smile lights up the room.
“I am so proud of him – of his courage, his spirit and the joy he brings into the world every single day. He’s the strongest and bravest boy I know!”
Keep smiling
Rebekah Smith, chief executive at Epilepsy Action said: “We’re so pleased to give this award to Tyler. He has shown such bravery, strength and resilience at such a young age. No child should have to endure the challenges Tyler has faced, but he has shown immense courage throughout it all.
“We’d also like to recognise the strength of Tyler’s mum, Rebecca, and the rest of the family. Having to watch your child have seizures every day, is unimaginably difficult. We appreciate it isn’t always easy to share experiences like this, and we are so grateful that the family have been willing to share their story in order to raise awareness of epilepsy and Lennox-Gastaut syndrome.
“It’s lovely to hear that Epilepsy Action has been able to provide the family with some comfort and support. Our aim is for every family affected by epilepsy across the UK to feel supported by our charity. From our helpline, to support groups, to one-to-one peer support, we have a range of services that ensure no one with this condition has to feel alone or isolated.
“A huge well done to Tyler – keep smiling!”
Star Awards
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