Blog · October 21, 2017

We need MORE EB Awareness!!!

Several years ago I happened upon a reply to a post about a child with severe RDEB in a special need parenting forum and one of the commenters stated that they should just “kill him”. That comment got a lot of likes and it got me very, VERY, VERY upset. I was irate. I could not sleep for days. That same week another EB mom had to defend herself from similar commentaries. On her blog she stated that her child could breathe and eat on his own, it’s not like he was on life support. What was she supposed to do? Starve him to death? Not change his bandages and hope for an infection to take him or… go get a gun? Ugh.

How insensitive could these people be?

Plenty. As I’ve learned over the years.

It’s so easy to discard a life, a human being, when it’s not your child, when you’re not in his or her life or even know them, is it?

I think this is why when I read the not-so-nice comments left underneath the video of Nicky I posted the other day ( I wasn’t upset at all. I had already worked it out in my mind long ago. I laughed when people suggested euthanasia, one even called me an awful mother because I am “too scared to let him go”. Pfft. Right!!!  10 years ago, the stupid, nonsensical, even cruel comments, would have ruined my day, my week, my month. I would have cried, been upset and angry for a long time. But I am stronger now. Nicky refuses to be touched by hate, he’s AMAZING. Nicky is the purest soul, he’s the definition of LOVE.

Now I scroll through the comments, laugh, and look for the GOOD comments. There are so many!!! I choose to concentrate on those. They make me smile and warm my heart.

This is why EB Awareness is so important. These children are amazing, they teach us so much about life, about love, about compassion and empathy. They need a little Hope, don’t they? Hope for a brighter future. Hope to even be able to look at the future.

October 25th through 31st is the annual official EB AWARENESS WEEK!!! Please help us in raising awareness! All I am asking is that you share “something” about EB during this week. It could be Nicky’s video, or it could be one of the many, many memes I’ve made or I shared on my EBINFOWORLD FACEBOOK PAGE.

I’ll write more about EB next week in a post you may be able to share! Please and THANK YOU!!!!

In the meantime, the video and the show are making the rounds, it will air in over 100 countries in the next few months. I STILL don’t have a US date!! This video has now been seen about 1.7 million times and counting. It goes up every day. EB Awareness! Yey!

Love & Light,