Luke is 21. He has severe complex epilepsy and a learning difficulty. His mum has written this on his behalf.
Luke had his first seizure aged six. It was not convulsive, I just thought he was dying. He started off confused then went stiff and purple, and was sick (but not in a normal way). After what seemed like hours – though, only a few minutes – he went pale and ‘fell asleep’.
He recovered as we arrived to hospital. Because he had a learning difficulty it was suggested that he had perhaps just been ‘holding his breath’. As a parent who had been through a traumatic experience, this was, at best, patronising, and at worst completely missing the significance of our first (of many) seizure event. It later transpired that Luke developed severe complex epilepsy which, to this day, has never been under any sort of control despite many drugs and a VNS implant.
We have experienced so much over the years with Luke. He lived at home until he was 18. As a family we learnt how to listen to a monitor and we taught his brothers how to use a suction machine. Using its bag and mask became normal for us.
When Luke was 12 I suffered a breakdown as a result of severe anxiety where finally some support was offered to him – a few hours a week, yet no overnight support. The after effects of living with a child with epilepsy (both positive and negative) live on. I don’t sleep well and am more ‘on edge’. His brothers missed out on so much, limited by his condition.
On the positive side, Luke continues to teach us so much. He is positive, brave, never complains and an all-round amazing young man. His brothers have grown up to be caring, empathetic, non-judgmental boys who choose to live life ‘now’. They are always trying to raise epilepsy awareness, and will do anything for their big brother who they describe as ‘a legend’!
Luke now lives in an amazing care provision with one-to-one care. He goes to college, works, has an amazing social life and is happy. Luke has gone into status epilepticus many times, spending far too much time in hospital and in the back of ambulances. So often, we thought he would not make it. We live with the knowledge that his complex epilepsy means everyday he could go into ‘status’, suffer an injury, or worse. We try to focus on the positives, that he is not only still here, but living life to the full!
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