Sibling Story - Ella, sister to Sebastian

Penny, mum to Sebastian, who is living with Dravet Syndrome, shares her thoughts on how Seb's sister, Ella, copes with the daily challenges they face.

Ella was 3 years old when her brother Sebastian was born. In the lead up to Seb's arrival, she was so excited to become a big sister and meet her baby brother. However, almost from the start it was far from what she had expected. At seven weeks old he was hospitalized with meningitis; a little over 2 months later he had his first seizure, which turned out to be the first of many.

Jake and sibling Sebastian

Seb's seizures are so unpredictable and unfortunately often mean that they restrict what we can do day to day, and affect family plans and events. In the last year Seb has had seizures on Christmas day, Ella's birthday, and also been too unwell to go on the much longed for post-pandemic family holiday with our close group of friends. In each of these cases Ella accepted without hesitation that one parent needed to be with Seb and made the best of the situation. 


Despite Ella's young age she has dealt with it all brilliantly and I don't know what we would do without her.

Seb's epilepsy also impacts Ella's school life. There are evenings where she is later to bed than we'd like due to dealing with one of Seb's seizures or needing to collect him from hospital. Or, when we don't get to do as much reading practice as we ought to. Or, where she is missing the parent who has disappeared to hospital with Seb whilst she is sleeping. Despite all this, Ella works so hard at school and is doing brilliantly in Year 1.

We are so proud of Ella, who really embodies what it means to be a super sibling. We tell her all the time how fabulously she deals with it all - it really brings it home to her for it to be recognised by those outside of her family.