One year ago today, a local boy, Danny, died in his sleep from Sudden Unexplained Death in Epilepsy (SUDEP). He was only 4 years old. Although we didn’t know him personally, his story and his death really hit me. Could this happen to James?
For the first two years of his life, Danny was just a normal kid. Then he had his first seizure that lasted almost 10 minutes. His parents took him to Children’s Memorial Hospital in Chicago, but left the same night without an answer as to why he had a seizure or what caused it.
About a month after that first seizure, he had another one. Again, they took him to the hospital and left without any answers. They were unable to find any cause for his seizures. He started taking medications to try to control the seizures and had regularly scheduled EEGs.
Other than the seizures, Danny was a normal kid. His parents described him as athletic, inquisitive, engaging, social, and affectionate.
He went 18 months without another seizure so his parents thought that the medications were working. Then, on the morning of December 12, 2009, they found him dead in his bed. I couldn’t even imagine.
Up until now, I had no idea what SUDEP was, or that it was even a thing. The Epilepsy Foundation says that with SUDEP, or Sudden Unexplained Death in Epilepsy, no other cause of death is found when an autopsy is done. They also say that more than 1 in 1,000 people with epilepsy die from SUDEP each year and that it’s the leading cause of death in people with uncontrolled seizures.
I asked this question in the first paragraph and I will ask it again: Could this happen to James? We’re still dealing with these infantile spasms. We’ve tried various treatments and medications and just can’t seem to get them under control. After reading about Danny, and learning more about SUDEP, I am really worried that it’s going to take James, too. I don’t think I will be able to sleep tonight. I think I will be spending the night in James’ room watching over him.
Danny’s parents have started a foundation, “Danny Did” to raise awareness about epilepsy and SUDEP. If you want to read more about Danny, and their foundation, here is the link:
