This story is about my brother.
He started having seizure not long after he was born, which obviously was very scary to see a baby go through such a thing. At first the doctors said it was just thrush but then it kept happening. It took a while to get proper help and eventually he was on medication, which he hated and would spit out and as it was red it looked like blood and got everywhere!
To be honest i don't really remember the very early years but as we got older we did have a very good and happy childhood together and in our own special way are very close. It was obvious that my brother was disabled but it took years for the doctors to find out, at first they thought it was edwards syndrome. After lots of testing we found out it was a translocation between chromosomes 18 and 7 what we now know to be hereditary. Even still his childhood was full of fun, riding bikes, parties, swimming, he went to school, and he was obsessed with Disney he knew all the songs, so he loved it when we all went to Florida!
Eventually though his seizures became more frequent and severe, he would fall down the stairs, so we moved to a bungalow. But the epilepsy had done quite a bit of damage and he had to go to a school in Lingfield, NCYPE. He did do very well there and all the staff loved him but his skills slowly declined but he remained happy and cheeky like he always was.
He now lives nearer to home and has had so many different types of medications for his seizures but nothing stops them completely and he has rescue meds often which is upsetting for us to see. But he still keeps smiling and doesnt appear to let it bother him. Though most people don't understand, he brings a lot of joy where he goes and is a very strong person, people often fight over who gets to look after him. He always gets what he wants just with a smile or a look, loves a good cup of tea and a dance. He also has perfect comedy timing to burst into his favourite phrases such as calling people naughty.
He doesn't understand what epilepsy is but he is still always himself. Hopefully one day the doctors can right the right combination of medication.