For SUDEP Action Day 2023, Orla O'Connor has shared this powerful testimony with us about the loss of her brother Kieran...
Kieran Martin O'Connor is a name we still mention on a regular basis -the light of our lives and my only brother; the oldest of the family, surrounded by three sisters and spoiled by all.
Kieran was born in 1981 and was diagnosed with epilepsy at around 6 months old when they told my parents he was just "colicky". I think they always knew something was wrong.
I was born in 1982 and shortly after my parents located to the United States. Kieran had a tonic-clonic seizure when he was around 8 years old in San Diego, where the paramedics saved his life. Although I was very young at the time, I have a vague memory of this time – and I remember feeling scared.
Kieran had been stabilised with medication for several years and I don't remember the last time he had a seizure.
Our beautiful Kieran was taken from us on 13th of April 2014.
On the night of his death, I lived with my own family, 20 minutes away. Both of my sisters, Grainne and Breda, and my young niece, Adelaide, were the only people in the house. My parents had taken a well-earned break for themselves to Amsterdam. My sister, Breda, had called me at 1am to say Kieran had a seizure and the paramedics she called were performing CPR.
By the time I got there, it was time to let him go. We, his three sisters, sat with him in his room and sang his favourite song, Daisy, Daisy.
I will never forget my mother’s cries for her boy when I called her to tell her.
Kieran was our perfect human being. He showed us how to appreciate all the simple things in life. He helped us slow down. He made us brave. He made us laugh. He has left a large, gaping space in our family.
Before Kieran's passing, I did not know about SUDEP. To the families who do not know about SUDEP, please research and learn all you can about epilepsy and the known risks factors for SUDEP. One day, I hope that there will be an answer on how to prevent it but in the meantime, always reach out to the community and Epilepsy Ireland who do tremendous work.
Our family wanted to share our story in memory of Kieran and all those who have been lost and for those who need it for the future. Share the resources and always support one another.
To Kieran I say:
My first playmate, my first friend. You made me a kinder, patient, and considerate person. You made me appreciate all the simple things in life. You were Julian's first playmate, his first friend. I am the woman and mother I am today because of you. We looked after you, but you looked after us too. Your smiles, your "quacks", your "moos", my life was better because of you. There has always been a Santa, an Easter Bunny and trick 'r' treating and we will always have them because of you. Our children will only be innocent for so long, but you were eternally innocent. So simple, so joyous, ever so beautiful. I miss you my brother and love you always.
Your little sister,
Orla
xxxx
We would like to say a huge thank you to Orla for sharing Kieran's story. You can learn more about SUDEP by visiting the 'SUDEP' section of our website.
Kieran O'Connor - Ar dheis Dé go raibh a anam.