Jacob was born healthy at 37 weeks. He was a happy baby and content. At four months old we noticed him making jerking movements in his crib and realised he was having a seizure. The seizure stopped after 1.5 and a cocktail of emergency drugs. We remained in hospital for 10 days while various tests were conducted. We were discharged with the possibility it could have been a one off. However, this wasn't the case and for the next 9 months we had countless ambulance trips and stays in hospital due to prolonged seizures.
Jacob spent his first birthday in intensive care after a status epilepticus which lasted 3.5 hours and for his own safety, and to stop the seizure, he was put into a coma and placed on a ventilator. He remained on the ventilator for over a week. During this time the hospital conducted genetic tests which showed he had Dravet Syndrome, a rare and catastrophic form of epilepsy.
Along with seizures Jacob has a global development delay, mobility issues, reduced appetite (and now has a feeding tube), risk of SUDEP and is non-verbal. He is on 5 anti-epileptic drugs but his condition is drug resistant so these medications will be added to or removed over time. The medication does not stop the seizures. He has been placed on a ventilator and admitted to paediatric intensive care a further 7 times over the last 4 years and regularly spends time in hospital due to prolonged seizures. However, through all this he smiles, he enjoys school, loves playing with his older brother, dancing to nursery rhymes and although he lost skills he has re-learned most of them and is happy.