Hello, we have just got home and had a lovely surprise, we have Rory's quilt, he is absolutely delighted with it. It's perfect. Thank you to everyone who helped make this for Rory, we are so grateful and love it so much.
Rory was a healthy baby boy born by elective cesarean. Four months after he was born he had a seizure that was difficult to stop, he was kept in hospital for two weeks for tests to see why he had such a difficult seizure. All tests came back normal and we were sent home hoping this was a one off. However, 6 weeks after Rory had another difficult seizure then another and was given epilim. As the months went on, Rory's seizures came more often and other seizures appeared. When Rory was 2 1/2 we were told he fits the clinical picture for Dravet syndrome, a rare form of severe epilepsy, this was confirmed after a positive blood test for a faulty gene associated with the sodium channels.
Rory is 16 years old now and currently taking 4 anti epileptic drugs, but despite this he continues to have seizures, mostly nocturnal. However, we need to be careful of his trggers that can cause prolonged seizures. These triggers things such as becoming over heated, over excited, illness and photosensitivity. He has severe learning difficulties, speech and language difficulties and mobility problems. He needs one to one, sometimes two to one support at a times to keep him safe from harm.
Rory is a happy boy and everyone who meets him adores him, he is full of life and makes others happy. He amazes me how he bounces back from some of his horrible seizures. He can have seizures that cluster and go on for days and emergency meds don't seem to help much but after a few days of recovery he is laughing and playing.