Ellie's Story

In her own words, Ellie talks about her experiences as a sibling to a young person with Dravet Syndrome, and her very special relationship with her sister, Amy.

Ellie with Amy

Growing up

Growing up with Amy meant that in some ways I grew up quickly, I saw things that no child should have to see, and deal with emergency situations at a young age. The first few seizures that i can recall, I remember being very scared and I would stand and scream, but the older I got I dealt with them better. Still at times, I would hold back my anxiety and my tears, and sadly in the end it all became the norm to me. 

As well as Amy being “different” I also felt different, I was the one out of my friendship group that was “different”, and had a different life and a different kind of relationship with their sibling. My friends would go out with their siblings, have a “normal relationship”. If they had a bad day they could go and vent to their sibling, ask for advice and talk about things that maybe you wouldn’t feel comfortable talking to your parents about. But I didn’t have this, which made me feel very lonely at times. As I got older and understood more about Dravet Syndrome I did become fearful and have anxiety for Amy’s life.

What helped me the most was to remind myself that despite everything Amy is happy. My mum and my family also made it easier for me, and always supported me when things got too much.

Having a sibling with Dravet Syndrome

Having a sibling with Dravet Syndrome is well, different.. but I wouldn’t change it. Amy and I are extremely close in a way that no one else would understand and our bond is unbreakable. Because of Amy’s certain characteristics she’s VERY honest and tells me how it is, and to me that’s a best friend. Growing up with a sibling with Dravet is hard and pretty scary but not only does it make Amy and I close, it also creates a strong bond between me and my mum as we have been through this journey together.

Quotation

Having a sibling with Dravet has brought so much positivity to my life and if it wasn’t for Amy I don’t think I would be who I am today.

Perspectives as an adult

Now I’m an adult I view life in a different way, I value my family and realise how precious time is. Being an adult means I now fully understand Dravet and therefore understand Amy and why she is how she is. It makes me want to help others and provide support to other families whose journey is similar to ours. Sometimes it's harder being an adult, because I have a better understanding of Dravet and how serious and devastating it can be, this does it make me over protective of Amy sometimes. 

Having a sibling with Dravet has brought so much positivity to my life and if it wasn’t for Amy I don’t think I would be who I am today. I now care for children and young adults with special needs and disabilities including epilepsy. I love knowing I am making a positive difference to people’s lives, people just like Amy. I 100% understand the standard of care parents/carers want for their child and I understand their worries and anxieties. My dream one day is to run my own centre to provide 5-star care to children and young adults with special needs.

Advice to other siblings

To other siblings that may be in my situation my advice would be to talk when things get too much, speak to your family. You may feel you shouldn’t as your parents have a lot to deal with already but you are also still their baby and they will always have time for you. Cry when you need to, It’s ok to be scared, it’s even ok to feel angry or left out. But also laugh as much as you can and try and see your sibling for them as a person and not for their disability.

Support networks

I haven’t been involved with other support groups but being a part of Dravet Syndrome UK certainly helped. Receiving the Super Sibling award when I was younger meant a lot and I have always loved meeting other families at the Center Parcs weekend. I connected with one sibling in particular and although we never really speak about Dravet, there is this mutual understanding and we just get what eachother has been through with our siblings. 

Our relationship today

Amy and I are close in a different way to your “typical” sibling relationship, as I know others in my position will get what I mean when I say this. Does she annoy me? Oh yes!! Just because Amy is how she is doesn’t mean we never argue, she is so very stubborn and is sometimes far too honest! So if  you want to know if you look nice, don’t ask Amy because you might not like the answer!  I love so many things about Amy, she is STRONG! So strong and brave, she inspires me so much. She is so caring and loving and although she may not understand why I might be upset or why I'm having a bad day, she will always try and comfort me in her own little way. We love to watch Disney films together and Amy loves a good pamper night. She’s my sister and my best friend and I love her more than anything.