A young boy from Great Barr, Birmingham, has been recognised for his remarkable resilience and bravery throughout his challenging battle with epilepsy. Seven-year-old Tyler Hartley received an Epilepsy Star award from the national charity Epilepsy Action, following a nomination by his mother, Rebecca.
A Mother's Pride
Rebecca expressed her immense pride in her son, stating, 'I am so proud of him – of his courage, his spirit and the joy he brings into the world every single day. He is the strongest and bravest boy I know! Some days are harder than others, but we are just so happy he is here. That is all we can ask for.'
Tyler's Medical Journey
Tyler has been living with epilepsy since the age of four and recently received an additional diagnosis of Lennox-Gastaut syndrome. Due to uncontrolled seizures, he is at high risk of SUDEP (Sudden Unexpected Death in Epilepsy). Rebecca described the tough journey for Tyler and their family: 'He has tried multiple medications but is drug-resistant. He has seizures every day, ranging from tonic clonic, tonic, absences, atonic, focals, and more. He is on multiple medications every day just to give him the best chance against SUDEP. Tyler has seizures throughout the day and night. There is no break from it. 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 is wrong or how he is feeling.'
Family Support
The family has had to adapt significantly to care for Tyler. Rebecca explained: 'He needs watching 24/7 and has no awareness of danger. His big sister Leah is amazing – she is 15 and they are the best of friends.' Tyler received another difficult diagnosis last year. '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 is 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.'
Impact on Education
His condition causes him to miss out on much, particularly school. '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. 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.'
Recognition and Gratitude
Rebecca wanted Tyler to be recognised for his incredible resilience at such a young age. '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.' She added: 'The support and knowledge from Epilepsy Action have also been amazing. We would also like to send a huge thank you to the neurology team at Birmingham Children's Hospital. We are forever grateful for their support and dedication to Tyler.'
Charity's Response
Rebekah Smith, chief executive at Epilepsy Action, said: 'We are so pleased to give this award to Tyler. No child should have to endure the challenges Tyler has faced, but he has shown immense courage throughout it all. We would 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 is not 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.'
Epilepsy Action wants every family affected by epilepsy across the UK to feel supported by the charity. From their helpline to support groups to one-to-one Peer Support, they offer a range of services that ensure no one with this condition has to feel alone or isolated. To find out more, visit their website.
