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Lost our son to SUDEP
Sun, 10/15/2017 - 17:10Topic: Share Your Story
Our 28yr old son passed away on Oct 3 2017. Cause of death listed as cardiac arrest due to seizure. Never Never in a million years did we think his seizures would take him from us. Eddy was born with an infarct on his brain and mild cerebral palsy , which caused him to have seizures. Non that where ever very serious or lasted long, he used marijuana to control his seizures and it worked awesome for him. But being an up standing man, he stopped smoking it because he and his fiance had just had a baby and Eddy wanted to have a better job with good ins. for his new family. He only got to share the first 3 weeks of his babies life and now he is gone. No mischievious life style, no drug addictions,all of the horrible things that go on in this world and a seizure tool our sons life. PLEASE Everyone that has seizures, or a loved one that has them be very aware SUDEP is very very real.
Comments
My son, Billy is scheduled
Submitted by HB_LongboardCrew on Thu, 2017-11-02 - 15:42
My son, Billy is scheduled for surgery and I am concerned that SUDEP will occur before that surgery happens. I am constantly checking in while he sleeps. I am afraid of disturbing him or upsetting him so I make up a reason I am looking in on him so he will not be alarmed by my obnoxious behavior. Billy will be 28 this December. He has had seizures since 8. Billy would have had the surgery but his doctor is out of network and the insurance will not cover it. After January the new insurance will have them in network but our coinsurance will be 10% of surgery and all doctors! That could be over $50K. I started a Go Fund Me campaign and it has raised 10% of the cost so far. ACA is reviewing his earnings history currently to see if he can use MediCal as he has missed lots of work this year from his breakthrough seizures while taken his meds. The neurologist says he is at the limits for Lamactal and Keppra and surgery is a good option but it is expensive even with insurance.To read his story: https://funds.gofundme.com/dashboard/fixbillysbrain
So odd that you lost a son
Submitted by MarciaH on Thu, 2017-11-09 - 20:26
So odd that you lost a son the same age on the same day....very sorry for your loss. I understand how you are questioning why this would happen to such a great person. Life is very strange - and certainly not "fair." Epilepsy is a horrible condition that so many do not understand or they think it can be easily controlled. Not so.
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