Sibling Story - Aaliyah, sister to Saniyah
Meet Aaliyah, older sister to Saniyah who lives with Dravet Syndrome. There may be a 16-year age gap, but it's been no barrier to them forming the most beautiful of sibling bonds. In her own words, Aaliyah tells us more about growing up with a sibling who is living with Dravet Syndrome.
Growing up with a sibling who is living with Dravet Syndrome has been hard at times. I’ve felt that I’ve had to grow up much quicker than others. It always made me feel sad having to explain Saniyah’s condition to others, especially having to explain all the epilepsy terminology and why it's not just something she can, or will, grow out of.
Some of Saniyah’s seizures, I remember in vivid detail. I can visualise and remember the whole day leading up to and after them. I’ve found it very scary, seeing Saniyah when she is having a seizure. In particular, I would worry about screams and absent seizures because they scared me a lot and I would constantly question if Saniyah was in pain.
The challenges we’ve faced
I always wanted to be strong for my other siblings, so as to not worry them, and I think that always made it difficult for me to show how I really felt. I’ve often felt isolated and frustrated because other people don’t know what it’s like to have a sibling with Dravet Syndrome, to see these things every day, and have this as their norm.
The anxiety that I’ve felt has been a big challenge in the past for me and I’ve found that therapy has helped with this. I am always worrying about my family, my siblings and how Saniyah is. Talking out loud about what I’ve seen in those emergency situations has helped me to process them – they happen so quickly, so talking about them and ‘slowing them down’ in my mind has been useful.
Watching my sister be denied from some schools has also been difficult to take. But it’s made me realise how important accessibility is and how we as a society need to do better to help others and celebrate everyone, no matter their background or circumstances.
How being Saniyah’s sibling has influenced me as a person
Being a sibling to someone living with Dravet Syndrome has made me appreciate everything around me - from spending time with family and friends to meeting new people and the world around me.
I found out that Saniyah had been diagnosed with Dravet Syndrome when I was at college. It made me really curious of neuroscience and epilepsy and the reasons behind it. I became really interested about the body and how a simple change in the DNA code can bring such uniqueness, yet lead to such devastating outcomes. I decided to do a biology degree and my dissertation was on “Can gene editing be used to treat Dravet Syndrome?”, so it’s really apparent how much Saniyah has influenced my life.
As well as my academic work, I think Saniyah has made me more grateful; for life, for people, and for recognising and celebrating everyone’s differences and individuality. Facing these challenges on a day-to-day basis with Saniyah’s condition has also encouraged me to really appreciate and value the time I spend with my family and my siblings.
My advice to other siblings
For other siblings, I’d say to remember that your brother or sister is so much more than just their condition. They’re a person just like you and experience happiness and sadness too. I always try to keep the times that Saniyah is really happy and it’s clear how much she loves me, in the forefront of my mind. It helps me to create positive thinking patterns and quieten negativity.
Talking to others is really important too. Don’t keep it all bottled up. Speaking out loud to your friends and family, and allowing yourself to feel your emotions can help to process them. I found that reaching out and speaking to my tutors at University, because they had scientific backgrounds, they seemed to understand in ways that my family and friends didn’t, which made me feel heard.
A beautiful bond with my sister
I love Saniyah and we are very close. She knocks on my bedroom door every morning to wake me up and she comes to me to sing certain songs because she knows I like to sing them with her. We listen to music and dance together and I love it when she sings nursery rhymes and songs by The Weekend - it’s so sweet and impressive when she knows all the verses!
Saniyah loves swimming and she really amazes me – she’s never had arm bands and is just a natural. I love that she loves olives. We share them on the beach after swimming.
My sister is such a unique individual and despite all the challenges, she brings such a great deal of positivity to my life. Although as a sibling to someone with a condition as devastating as Dravet Syndrome you do see your sister or brother suffering, you also get to witness the times when they are so happy and bouncy and watch them do their favourite things. It makes the moments you spend with them even more special.