When I read earlier this week that Disney star Cameron Boyce had died in his sleep because of an epileptic seizure, I thought I was going to be sick.
That’s because, as the mother of an 8-year-old with epilepsy who has been awoken five times throughout the night by the hospital-grade, home-use heart-rate and oxygen-level monitor that keeps tabs on my son as he sleeps, this is a fear I live with all the time.
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I thought of Cameron’s parents, and of his young life cut short. And then my thoughts returned to my own boy, Bennett, and to the many friends I have in the epilepsy community, whose messages began flooding my phone as soon as the news hit, all of us shaken by it on a deep level — and all of us knowing that this truly, truly could be one of us.
Cameron reportedly died due to SUDEP, which is the Sudden Unexpected Death in Epilepsy. And much like Sudden Infant Death (SIDs), scientists haven’t found out exactly what causes it. There are theories surrounding specific types of seizures, heart arrhythmias or impaired breathing that can occur during seizure activity. But all we know for sure is that some people with epilepsy go to sleep — and then never wake up.
There are 50 million people who suffer from epilepsy worldwide, and of those 50 million, 1 in 1,000 will die from SUDEP. If a person’s seizures are uncontrolled (aka intractable), like my son’s, that number rises to more than 1 in 150. That’s 1 in just 150 people who will die in their sleep.
As moms, we worry about SIDs from the moment our child enters the world, many of us constantly checking, throughout the night, to make sure that they are breathing. But becoming an epilepsy mom comes with the scary realization that the SIDs-related fears won’t ever end.
I can’t even begin to describe how terrifying is it to be jolted awake at 2 a.m. by the alarm of a cardiac oxygen monitor, alerting me that my child might be dying RIGHT NOW. How disorienting it is to run down the hallway into my son’s room, fighting, through the haze of sleep to recall the details of the CPR classes I took in preparation for this moment — all while wondering if tonight is the night I will need to use the defibrillator that sits next to his bed to shock his body back to life.
As the mother of a child with intractable epilepsy who is at risk for sudden death, I am acutely aware that every night I tuck him into bed may be his last.
Bennett loves Legos, superheroes and family movie night. He asks me to snuggle with him each evening before bed, and tells me how he dreams of designing video games when he gets older.
At the end of the month, he will be admitted into a children’s hospital with a nationally recognized epilepsy center. There, doctors will withhold all of his seizure medications, and for a week, try to induce as many seizures as possible while they study his brain, in an effort to decipher exactly what is causing his disorder. I’m terrified, as I’ve been warned that this process can leave him intubated and in a medically induced coma, or in some cases, lead to death.
But not doing this, too, could also lead to his death.
If we can’t get Bennett’s seizures under control, he might not be with us for very long, and that is the reality that haunts the little sleep I manage to get.
I don’t know is how to put a child to bed, every single night, knowing that he might never wake up. I also don’t know why Cameron Boyce is gone, or why anyone else with epilepsy has had to die this year.
But what I do know, for certain, is that SUDEP isn’t just a “thing” that happened to some TV star.
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