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Lost my 11 year old to SUDEP


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Only two weeks ago, I found my 11 year old son's lifeless body in the morning. I knew my life would never be the same. SUDEP - Sudden and Unexpected Death in Epilepsy.

My son, his name, Takeshi had a bed monitor so why did I not hear? I feel I cannot go on, like I want to join him. He was closer to me than anyone, we were like one soul, one mind.

He was only diagnosed with Epilepsy in January, but after lifestyle changes and addressing his triggers, we thought he was well on the road to recovery. Epilepsy is a disease which makes you feel as though you are going down the Rabbit Hole. We could not understand it at first. We just wanted to get him better. He was tired all the time had headaches. But the truth is not Neurologist ever told us the danger of dyeing in one's sleep.Why not? They said most seizures do not harm the person. I wonder if I had been sleeping with him, if I could have saved him. I wonder why I did not buy the other Monitors available? The question that eats at my heart,is if this was avoidable???

He was a unique child. He loved making Baskets and Bonsai's. he we study Youtube videos about it. We went to many courses together. I blame the school change for his stress. I always knew he was Special, but after years in a Forest School, we knew we must make a transition. That is when he started going downhill emotionally. I wish I had never brought him to that school. He was such an amazing boy, but he had no friends there. I feel it really killed him. I wonder if it was a kind of Spiritual Suicide?

Does anyone out there wonder that.

He said some months ago, How he wanted to die. And asked me if he would be Reincarnated? He said several times, he was tired of life, and wanted to start again. 

It has only been two weeks, but I feel I have woken upon into a Horror Film. I see him everywhere. It was my job to protect him. The nights are the worst. I wonder each day how I will survive???


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Tommy's mum
  • cinnamon I am so sorry what an awful shock for you. Epilepsy is an unusual condition that affects people differently. My sister developed nocturnal epilepsy out of the blue after the birth of her son 24 years ago. It was a shock no family history no head injury or trauma nothing. She was unable to drive for a couple years until she had been seizure free and still takes medications to keep it in check. There is sadly nothing you could have done no more protection you could have given your boy it was just a random very tragic happening. Sleeping in your bed would not have prevented his passing, no further monitoring would have.I am sorry the school change was difficult. Forest schools allow so much freedom and other schools limit freedom of choice and focus on education. You made the best choice for him at that time it is ok. Epilepsy caused his death not spiritual suicide or a desire to start over. he sounds like a sensitive and spiritual soul and he will always be with you in spirit for the rest of your life you just cannot see him. It does feel like a horror film you are correct or a nightmare you cannot wake from but with help and support you can come through this. Grief is a long journey with a lot of learning involved and you are still in the early days. The first year is the worst but as you make progress and take small steps forward to participating in life again the pain will very gradually recede and you can be more at peace. Right now you are in shock and disbelief and questioning evrything which is normal. We all meet on Loss of an adult child by Mom of Justin the thread with the most views, because it keeps us grieving parents in one place. Please join us there just post and you will get replies from parents who are all surviving the loss of a child/children. We understand uniqely the pain you are experiencing and can offer help and support to you ok? Take care
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