Why didn’t we know what SUDEP was?
That epilepsy could kill?
That a single seizure could end a life
She could be with us still.
But you didn’t tell us.
Why were we not made aware that she could die in her sleep?
That one seizure could stop her heart?
That her life was in danger
From her first seizure, from the start?
You didn’t tell us.
You didn’t tell us what the risks were.
We thought she was safe; you didn’t make us aware.
I know you think that it’s frightening to know
But we are the ones that care.
You didn’t tell us.
Why are so many young people dying,
ignorant of the truth?
Too many men, women and children
So much lost youth.
Ask yourselves why you don’t tell us?
Why we are left to find out when it’s too late.
There are many lives that could be saved
Don’t leave it to chance or fate.
No one else should have to ask: Why?
Thank you …. and Happy Soaping!
IN MEMORY OF SAMANTHA
[d m, y - d m, y]
Mom CHRISTINE CARTER shares WHY SHE'S PUBLISHED A BOOK OF POEMS TO RAISE AWARENESS OF sudep
Thirteen years ago, I lost my daughter and her unborn son to SUDEP. This was the moment my life changed for ever.
Samantha was my first child, born when I was only sixteen. She was beautiful inside and out. It was a happy day when she told me she was having a baby. She had suffered from epilepsy from the age of sixteen, always as she was coming out of sleep and we never considered her to be at risk.
Prior to losing Sam, I was an ordinary mum of three, a primary school teacher working towards her first headship.
I have since had several years working as a headteacher and am presently working back at the chalk-face, teaching primary children in a job I adore. I have worked in education for over 20 years.
I decided to attempt to write my feeling down about the loss of my daughter. I have been trying over many years to do so, and found it overwhelming at times and I often gave up.
As time has moved on, I have now been able to put my thoughts and feelings into words.
I hadn’t considered publishing them. This is a very personal experience for me. However, after sharing them with family, friends and other bereaved mothers, I thought it may help for others to go through my journey with me and recognise that there is a way to get through the devastation.
It is not my intention for the poetry to just create a feeling of sadness, more that they will instil some degree of hope while pouring out so many emotions.
Until she died, I had never heard of SUDEP (Sudden Unexpected Death in Epilepsy). It kills approximately 2000 every year but is still not spoken about to those with epilepsy or to their parents/carers. Through this book, I would like to raise awareness in the hope that it may prevent someone from sharing our tragic experience.
Tamzin Jeffs, who cofounded SUDEP Aware after the loss of her sister to SUDEP in 2007, says: "We are very grateful to Maria and her family for taking action to help those in the dark about SUDEP. Sadly, too many people living with epilepsy are unaware of SUDEP, how they may reduce their risk and the importance of discussing this with their healthcare provider. Initiatives like "Soap for SUDEP" help to bring much needed public attention to the leading cause of epilepsy-related death and vital research funds towards the prevention of SUDEP."