BiographyTyler was born a beautiful blonde hair, blue eyed baby boy, full term and weighed 6lb 2oz. As Tyler started to grow I noticed he was delayed in his milestones. His sister is autistic with a missing chromosome paternally inherited so we chose to do a genetic blood test. Months later results came back; Tyler was missing the same chromosome and was referred for an autism assessment.
Tyler started nursery although non verbal and delayed in all aspects of his development but I wanted him to go for socialising. Fast forward to Tyler's diagnosis, in April 2023 he started to have what I called startle episodes- I called his paediatrician and we waited an appointment. Fast forward to June he had his first tonic clonic seizure, he had just been poorly but I had no idea what had happened... Tyler was sent for brain scans and he got his diagnosis of generalised epilepsy June 2023. Tyler has lots of different seizures from tonic to tonic clonic and absences, drop seizures and myoclonic jerks. Tyler has tried multiple medications but despite this he still has seizures daily. He attends a fantastic special school and he's happy there which is all I can ask for.
Having uncontrolled epilepsy puts Tyler at the highest risk of SUDEP (sudden unexplained death in epilepsy) but after the hardest two years trying to accept this condition we have learned to love life and be grateful for every day with him. Tyler has since been diagnosed with Lennox Gastaut syndrome in Feb 2025,a rare and severe form of epilepsy which is life limiting. He's our whole world and we are so so proud of everything he goes through but continues to overcome.
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