My mum Fidan was one of those people who were always full of life, with the biggest smile and love to give to everyone. What happened to her came as a big shock. Aged 51, with no medical complications, her life was sadly taken from her and us.
No matter what life threw at my mum, she had always overcome it. Being a strong single mother to two kids, she managed to stay as positive as she could. In particular, she enjoyed her dance classes, attending every weekend, then coming back and explaining it to us in detail. Her sarcasm and great sense of humour never failed to brighten up anyone’s day. She was a genuine fighter, but this was one battle she did not win.
My mum had a seizure one morning, whereby miraculously, my brother heard her whilst asleep, and managed to call an ambulance. He said the seizure was so severe, he thought she was going to pass away - having not known anything about seizures, or ever seen mum sick, this was what he witnessed. An MRI was then booked for three months away (long period of time).
So, she was put on medication in the meantime... at no point were we told of the potential of SUDEP occurring.
The medications were keeping her up at night, which is a risk factor for seizures in itself.
Therefore, she had her GP prescribe a new medication, of which he was going to increase the dosage over the next few weeks.
She was able to sleep and was well and happy, with just a slight fear it may happen again.
Whilst I and my brother were out, she had another seizure.
I came home too late, to find she had passed away.
The cause of death, after a long investigation, was deemed to be SUDEP.
This was one of the first times we had heard about it. I still wish till this day, that if we were told about it by her GP, or Neurology team, that we could have taken precautions, or looked into it at least for the part where her medication dosage may have been too low.
I was 25 and my brother was turning 18 the week after she had passed away. The impact was heavy on our lives. Having the one parent growing up, whom we had never lived apart from at any point - to having no one in an empty home.
We appreciate our family and friends during this time, but the shock of it all is still there, especially when you are left with your thoughts.
On the brighter side, her name will live on with the jewellery brand that I have made. The brand also supports an environmental cause, helping to plant trees ensuring reforestation, which particularly goes with the meaning of her name which is ‘sapling’, a young tree.
Having come across SUDEP Action, the charity has really helped raise awareness and money for a cause that is so close to our hearts. If we can reach one person about the impact of epilepsy by sharing this story, then it would feel as if we have succeeded. Reading the stories on the SUDEP Action website has really helped us realise that we are not the only ones affected by this, and if my story can help someone feel this too, then I will be very happy.
Gulten (Fidan’s daughter)