In this personal testimony for #SUDEPActionDay, Arabella Scanlon writes about her daughter Brianna who sadly passed away from SUDEP last year.....
Every day I used to have the privilege to look at Brianna; and I would pinch myself at the realisation of how I was looking at my hero every single day. Some people never get to meet their hero, but for nine wonderful years, I had mine by my side.
Brianna was born with epilepsy – one of many challenges she faced stemming from an underlying genetic disorder.
This led to a completely different life for us as a family from what we were then used to before Brianna was born. Constant one-to-one support and so many different hospital appointments trying to investigate the best course of care for Brianna.
Some medications worked for a while for Brianna in helping control her seizures; others didn’t, but it was through these continual hospital appointments that we were able to get a better picture of her epilepsy. Brianna was non-verbal so couldn’t tell me how her epilepsy and her medications were affecting her – but a mother’s intuition is a strong thing and I know that she found the chopping and changing of medications difficult alongside her seizures.
But eventually we got there. There was MRI’s, EEGs and throughout all of this, there was the wonderful support of her medical team. We found the right combination of medications and Brianna’s whole life changed.
Her condition was much more controlled. She started to try and communicate; she had far better balance; started riding her pony; and would dance alongside the music channels. She was living her magical life to the fullest.
I cherish all these special moments. Despite the challenges that Brianna and our entire family faced – due to the stresses of her 24/7 care needs – the mere mention of her name instantly makes me break out in a smile and fills me with immense pride. The hospital appointments and all challenges we faced are totally secondary; these are my overriding memories of my wonderful child.
On Thursday 21st of November 2019, my hero left us.
It was just like she was asleep. I had seen many of Brianna’s seizures over the years, and I knew all the tell-tale signs of when she had one. This didn’t look like anything epilepsy related. In my head I tried to make sense of it all – Brianna had so many challenges facing her in her short life, but I thought her passing couldn’t possibly be associated with her epilepsy.
When I was told Brianna’s death was due to SUDEP, I was shocked. I’d never heard of SUDEP and never knew that epilepsy could take my child. This is why I’m sharing Brianna’s story on #SUDEPActionDay2021.
I know it’s not a nice topic to talk about given there is so much we don’t know about SUDEP but as a mother who has lost a child to SUDEP, I want to make a direct appeal to parents of children with epilepsy and those living with epilepsy across Ireland.
Life is fragile and life is temporary – this applies to everyone, epilepsy or not.
When it comes to SUDEP, I’d appeal to those living with epilepsy to focus on what we DO know rather than what we don’t.
We DO know that the better a person’s epilepsy is controlled, the lesser the risk of SUDEP. We DO know that lifestyle changes, knowing your triggers and ensuring you follow your medication routine can help reduce the number of seizures. And if you don’t know much about SUDEP, we DO know that it is something you can raise and discuss with your medical team.
Brianna will always be my hero, but a hero’s work is never done so on #SUDEPActionDay, I appeal to you on Brianna’s behalf - please take the time to educate yourself about SUDEP. There are simple measures that you can take to help reduce the risk and this could potentially prevent the loss of many other heroes – big or small.
Thank you for reading.
My hero Brianna, 2010 – 2019.
Thank you Arabella for sharing this piece for SUDEP Action Day. You can learn more about SUDEP by visiting the special section of our website.