Sibling Story – Georgia, sister to Adam

Meet Georgia, older sister to Adam who lives with Dravet Syndrome. In her own words, Georgia tells us more about their special bond, the impact of Dravet Syndrome on her childhood and how growing up with a sibling living with a complex condition has shaped her outlook on life.

Growing up

Growing up with a sibling who is living with Dravet Syndrome was complicated. Adam is 25 now, but when we were younger, every day was very unpredictable. He used to have very frequent seizures and needed constant supervision. I would get upset every time he had a seizure and I felt really anxious knowing they could happen at any time. It was so hard seeing him battling with Dravet Syndrome and all that came with it. That being said, Adam was my best friend growing up and we had such a special bond.

There have been so many lovely and positive times being Adam’s sister but there have also been hard times too; from hospital visits as a child when his seizures were not under control, to recent struggles with his own mental health. I often feel like I wish I could take all of these hardships away and make his life feel easier for him. It’s hard knowing that I can’t.

How being Adam’s sibling has influenced me as a person

Being a sibling to someone who is living with Dravet Syndrome has definitely impacted my life and shaped the way I see the world. From giving me an open mind and a level of understanding around the complexities of family life when caring for someone with a disability, to guiding me towards my career. I now work at a Carers Centre which provides support and respite to young carers – children who have a family member with a disability. I can confidently say that Dravet Syndrome gave me a passion for supporting families like mine and ensuring all voices are heard and validated.

My advice to other siblings

If I were to give advice to other siblings, it would be to, of course, be patient with your sibling, but also be patient with yourself. It can feel really difficult to manage your own feelings when you’re trying to look after someone else’s.

I would really recommend reaching out to your local Carers Centre and see if they have support that you can access. I attended my local Young Carers group growing up and meeting other young people who had a similar home life really helped!

An incredible close bond with my brother

Our relationship has changed greatly over the years as we have transitioned through different stages in life. When we were children, living under the same roof, we were incredibly close. We used to love spending time together, reading books, watching films, playing in the garden and doing lots of fun things. I was also the person who was able to calm Adam down when he was feeling overwhelmed and needed help.

Now we are adults, our relationship has changed and adapted into something else. However, though we unfortunately do not see each other as much, we still share the same bond, often shifting back into how we were as kids.

Support from Dravet Syndrome UK

Adam loves attending the Dravet Syndrome UK Family Weekend Away at Center Parcs each year and I was able to attend with him this year for the first time! It was amazing to meet lots of other families affected by Dravet Syndrome, and experiencing the sense of togetherness was incredible. I think, over the years, it has been good for Adam to know that other people are living with Dravet Syndrome and he’s not alone.

I have recently raised over £900 by running the Race to the King 50km ultra challenge, for Dravet Syndrome UK. I decided I wanted to raise funds and awareness as the charity is very close to my heart. It’s provided vital information, support and reassurance for us as a family during difficult times and I think they do a brilliant job of raising awareness for a condition that is otherwise pretty unknown to the general public.