I came across a reddit page yesterday that deeply disgusted and disturbed me. The title of the post was this:
“If I found out my child had that (EB), I would kill them in their sleep.”
This is sadly not the first time (and it won’t be my last) where I encountered ignorant comments from people that are just, well, ignorant. As if the lives of children with EB have no value, are unimportant, have no purpose and no place. As if living with EB is simply a burden to erase without a single thought.
I call them ignorant because this is not THEIR child, THEIR flesh and blood they are talking about. Would they really kill their own child in their sleep? Would they really face me in real life and tell me this? Of course not. And the Internet raises its ugly head this way once again. In the anonymity of a fake profile, people feel free to be hateful, to be disgusting, to be vomiting words as if they mean nothing.
Every life is a gift. As I wrote in my book Butterfly Child, if I learned anything from my son, is that every life matters. Does EB suck? Hell ya. Does my child *HATE EB*? Hell Ya. He tells me he hates EB often. Yet, my child does not want to die, he loves to laugh, he loves unconditionally and is the most precious human being I ever laid eyes on. I met countless other EB patients who consider their life a gift as well. Even those who suffered even more greatly than my son has. No EB patient I ever met wants to die. Not one. Sure, some complain about the pain, or unfairness, the inability of doing stuff, the horrid non-healing wounds and what-have-yous, but nobody wants to die. NOBODY.
So, please, when you see anyone suffering, don’t think for a minute their life has no value, that their life does not matter. Because it does.
Love & Light,
