When I read earlier this week that the Disney star, Cameron Boyce, had died in his sleep because of an epileptic seizure, I thought that I 'd thought it was a bad thing. was going to be sick.
Indeed, as the mother of an 8-year-old child with epilepsy who was woken up five times during the night by a quality heart rate monitor and home oxygen monitor professional who watches my son while he sleeps, it's a fear with which I live all the time.
I thought of Cameron's parents and his shortened life. And then my thoughts went back to my own boy, Bennett, and to the many friends I have in the epilepsy community, whose messages began to invade my phone as soon as the news came out. We were all upset by her – and all of us knowing that this could really, really be one of us.
Cameron reportedly died as a result of SUDEP, the unexpected sudden death related to epilepsy. And, like Sudden Infant Death Syndrome (SID), scientists have not discovered exactly what causes it. Some theories surrounding specific types of epileptic seizures, cardiac arrhythmias or breathing disorders can occur during epileptic seizures. But all we know is that some people with epilepsy go to bed and never wake up.
There are 50 million people in the world who suffer from epilepsy, and out of those 50 million, 1 in 1000 will die of SUDEP. If a person's epileptic seizures are uncontrolled (ie, insoluble), like my son's, this number reaches more than 1 in 150. That's 1 in 150 people dying in his sleep .
As mothers, we worry about IDS from the moment our child enters the world. Many of us constantly check, throughout the night, to make sure they breathe. But becoming a mother of epilepsy is a frightening realization that fears of child death will never go away.
I can not even begin to describe how terrifying it is to be woken up at 2 am by the alarm of a heart monitor, telling me that my child could die right away. How disoriented he is to run down the hallway in my son's room, fight, sleep in the fog of sleep to recall the details of the CPR classes I've followed in preparation for this moment – all while wondering if tonight will be the night that I will need to use the defibrillator who is sitting next to his bed to revive his body.
As a mother of a child with persistent epilepsy and risk of sudden death, I am fully aware that every night I sleep in bed can be his last.
Bennett loves Legos, superheroes and the family movie night. He asks me to snuggle with him every night before going to bed and tells me that he dreams of designing video games with age.
At the end of the month, he will be admitted to a children's hospital with a nationally recognized epilepsy center. There, the doctors will refuse all his medicines against seizures, and for a week, try to provoke as many crises as possible while studying his brain, in order to decipher exactly what causes his illness. I am terrified because I was warned that this process could leave him intubated and in a medically induced coma, or even lead to death.
But not doing so could also lead to his death.
If we can not control Bennett's fits, he may not stay long at home, and it's the reality that haunts the little sleep I can get.
I do not know how to put a child to bed every night, knowing that he may never wake up. I do not know either why Cameron Boyce left or why someone else with epilepsy had to die this year.
But what I know for sure is that SUDEP is not just a "thing" that has happened to a TV star.
Learn more about Yahoo Lifestyle:
Why health insurance is not enough to save some families with sick children from financial ruin
Disney stars and celebrities react to Cameron Boyce's death
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