Aryan is a very happy boy. He was born with hypoxic ischaemic encephalopathy and was in NICU for 4 weeks, and a total of 8 weeks in the neonatal unit. We got him back after a very big struggle, he was recovering well but when he was 6 months old had his first seizure for 5 mins. Since then he has been having 1000s of seizures every day. He was diagnosed with epilepsy but his seizures were getting worse, lasting for 2- 3 hours and slowly he lost all his abilities to talk, walk or move. Anything can be a trigger for his seizures like being sad or happy, excitement, temperature, cold. A small change in temperature caused him to have a status epilepticus. Finally a new neurologist for Aryan diagnosed Dravet Syndrome, a very rare and severe form of epilepsy. He has more than 100 seizures in a day and different kinds varying from myoclonic jerks, absence seizures, tonic clonic and generalised seizures. Now, 5 years on, his seizures are a bit better controlled but the Winter is always hard on him. He is always exhausted because of the medications he takes. We are managing to take him to school and trying to keep him happy & occupied with things he likes.
He is always smiling and giggling and likes going out, but due to his allergies and conditions we can hardly take him anywhere. Now he needs support in every aspect of his life, he can still have seizures any minute.