“Brianna, you’re my hero and I am so proud of you”
October 16 marked SUDEP Action Day, which aims to raise awareness around SUDEP.
SUDEP is the sudden, unexpected death of someone with epilepsy, where no other cause of death can be found. It is estimated that we lose between 21-44 people from SUDEP each year in Ireland.
“I’m hurt that I didn’t know about it. It killed my daughter, I knew nothing about it,” says Arabella Scanlan, proud mother of Brianna Lynch, who passed away from SUDEP at just nine years of age.
“We knew one day that epilepsy would get her. I thought it would be from a seizure. I thought it would be epilepsy.
Nobody had said anything about SUDEP.
So, when I knew she had died from SUDEP, I actually felt really short changed because I wasn’t trying to protect her from SUDEP, I knew nothing about it.”
It was a paramedic that first mentioned to Arabella that Brianna’s death may have been caused by SUDEP. “He said; ‘it looks to me like SUDEP’,” Arabella recalls, from the day that she lost Brianna.
Completely caught off guard, Brianna’s mother was left confused and hurt as to why she had never heard of SUDEP when she worked so hard to protect her daughter from epilepsy.
“He said people don’t talk about it and I said but why not? He said; ‘so not to frighten people’,” Arabella explains.
“Out of her dying, that was a big thing that hurt me. Nobody had told me about it. It’s not good enough that they didn’t want to scare us. Life is scary, you need to know the hard facts on these things.”
Although nothing can be done to stop a SUDEP death, it is important for people with epilepsy to be aware of the condition so that they can take precautions to lower their risk.
“The GP decided to do an autopsy with Brianna and at the time I was really upset about that. Why would you want to do an autopsy? Well, thank god she did because it was the best thing that ever happened.
“My main concern was that it didn’t come back as a seizure death,” Arabella explains. “Because we were with her, I knew it wasn’t a seizure.
“I did all I could in the nine years I had her, I did all I could. She was never outside of our sight. She was never left alone, so that if she did have a seizure, there was always somebody with her.”
Although it took eight months for Brianna’s family to receive her autopsy report, which was likely due to the impact of the pandemic, Brianna’s autopsy came back as a confirmed SUDEP death.
It meant a lot for Brianna’s family to finally receive her autopsy report.
“I said thank you and I burst out crying,” Arabella admits. “I cried not out of grief but out of shear and utter relief that I was right, I knew I was right, but this was clear evidence that I was right.
“I could not punish myself anymore. I could sleep that night because somebody else had told me what I had already knew and it was for certain.”
Since Brianna’s passing, her family have worked tirelessly to raise awareness about SUDEP in Brianna’s memory.
“Despite their tragic loss of Brianna in 2019, Brianna’s family have been central to helping assist our enhanced communication around SUDEP in recent years,” says Paddy McGeoghegan, Advocacy and Communications Manager at Epilepsy Ireland. “By sharing their story about the loss of little Brianna, they have helped so many people with epilepsy and their families educate themselves on the risks and what can be done to reduce them.
“They have also fundraised to help support our work in communities across Ireland, work which involves educating the wider epilepsy community about SUDEP.
“We are so grateful for their continued support of Epilepsy Ireland in memory of Brianna – support which has helped so many people in her name; may she rest in peace.”
“Brianna did everything,” Arabella says, as she smiles. Despite “her low muscle tone, her not being able to speak, her not being able to do stuff, she did everything.
“She did more than most people. Absolutely more than most people.”
“I’m proud of all my kids but Brianna I am super proud of. I always called her my superhero and only a superhero would’ve been able to go through what she did, not complain and have a smile on her face.
And only a superhero would be able to keep positive and make all this positive.
“We all think of her, and we miss her desperately, but you can’t talk about Brianna and not end up laughing or telling stories,” she says.
“I used to say to her, Brianna you’re my hero, and I am so proud of you. Every day I told her how proud I was because I was, I genuinely was.”
Not only is SUDEP Action Day an opportunity to remember all of those that have passed from SUDEP, but it is also a day to raise awareness about the condition and the steps that can be taken to potentially lower the risk of SUDEP.
“It is very important for the entire epilepsy community to be aware of SUDEP,” says Paddy McGeoghegan. “While the exact mechanism as to why SUDEP happens is still unknown, research has shown that there are certain factors which can increase a person’s risk of SUDEP.
“These include having frequent tonic-clonic seizures or having untreated epilepsy. Being aware of these and taking action wherever possible can help to reduce a person’s risk of SUDEP.”