Over the past week or so, the internet has been full of posts about Cameron Boyce, the young actor who died from a seizure in his sleep. It seems everyone is shocked by it. They never knew seizures could kill.
Their innocence on the subject is not uncommon… it is the majority of the world who thinks this way.
As an epilepsy mom, I am, of course heartbroken for his family, knowing that their pain could soon be my pain.
Maybe you know someone who has epilepsy. I know more than once I’ve mentioned my son has epilepsy and I’ve been met with “oh yeah, my second cousin has that!” or “Oh my child had a febrile seizure once, it was so scary, it lasted 20 seconds.” Hear me know when I say I am not discounting the fear of any parent who has to witness their child’s seizure. It is scary. But, so many people chat it up like nothing… “oh yeah, my second cousin has a weird freckle on their finger too!”. This is not a comparison we want you to be able to compare to. We love you too much to want you to have to face this.
Because of the loss of Cameron, awareness of epilepsy has been raised, in the worst way possible, but raised. I don’t know what his official diagnosis was. Many people are diagnosed with epilepsy… no fancy names, just epilepsy. Others, face words like catastrophic, high mortality rate, global delays, and regression. These are the words I face.
Have you ever wondered why a parent of a child with an intractable (medications don’t work) looks exhausted? Ever wondered why almost every conversation with them eventually makes the way back to seizures? It is because that is all we can concentrate on. We have to.
And yet people just don’t understand why we seem sad, depressed and anxious at all times.
In comparison, when a child is diagnosed with cancer, everyone who knows and loves that child feels a deep, punch-to-the-gut, sadness. And I know this to be true because I have felt that punch when hearing that news more than once.
Various websites will tell you that 10% of people with epilepsy will die from a seizure.
According to curesearch.org 12% of children diagnosed with cancer do not survive.
And then there’s those tougher epilepsy diagnoses, the ones that cause the parents to rearrange their entire lives, houses, work, vacations. I know because it is a number that haunts me… 20%. There is a 20% chance that my son will not live to adulthood.
Every diagnosis comes with the scary side. I am not discounting the scariness of cancer or epilepsy. But I am asking that the next time you talk to a parent who has a child with epilepsy, understand the scariness of it. Recognize that epilepsy has a death rate nearly as high as childhood cancer, and more severe epilepsy cases have a higher death rate than cancer.
There are no “my kid is worse off than yours” contests, but the reactions of many make us feel like our child’s 20% chance of death isn’t as scary to us as the parents who are facing other diagnoses.
I’m here to tell you, it is as scary.