Blog · November 22, 2015

…and the truth of the matter is…

I don’t often talk about Connor in my blogs, but I will today, among other things I just need to get off my chest in the nicest way possible. 😛

I truly feel that the unsung heroes in the special need family are the siblings. Because Connor was born after Nicky, he never had to learn to accept EB, he just “knew” at a young age that Nicky was fragile and he naturally touched him gently even as a toddler. As he grew older he even started being his little servant, not minding at all when Nicky would ask him to get water or get him whatever he needed and never resented him.

Connor is now 12, and for a while now he’s developed a love-hate relationship with his brother. So much so that if you ask Nicky if there is something or someone that makes him mad, the only answer, besides the EB itself is “Connor”. Nicky has such an amazingly sweet disposition that for him to say such a thing sometimes is shocking to me, then again, I see them hug it out like no two siblings I ever saw, hence this relationship between brothers can be summed up as “complicated”. Then again, show me two siblings that didn’t fight or hate each other as children and we would call that “unusual”, so there’s that as well.

Oh yes, it’s complicated.

I had a long talk in the car with Connor on our way to his school the other day and when I told him that I was excited because an Italian journalist was going to interview me for their magazine about Nicky, he was sad that he felt excluded once again. My heart sank. “Oh no”, I told him, I will make sure, as I always do, to include you as well. I then asked him what was the hardest part of having a brother with RDEB and his answer was that he could not “physically” play with him. He then expanded his answer with an eloquence that blew me away. He said: “When he’s in pain I feel sad”, “When he cries I’m annoyed”, “When he’s mad I get angry”, “When I see his wounds I feel cold inside”. He further told me he’s amazed he’s still alive. I don’t know if I felt proud at that moment, knowing that he KNOWS what’s in store for him if a cure is not found, or… sad that he knows his brother’s life could end at any time.

I sit here with a lump in my throat thinking about this conversation.



Nicky’s wounds over the years have exponentially gotten worse. His left arm (above) has seen the brunt of it. Not that his knees or feet are much better, but if I was going to point out an area that has been the most troublesome, that would be his left arm, bar none. This arm has given us a cancer scare more than once, has given us wounds like we’ve never seen anywhere else and while these photos were taken a couple of weeks ago, I can sadly say, this looks awesome compared to what it looks like now.

I am posting these photos today not to be an exhibitionist or to evoke pity, I want to be able to tell the truth. This is the reality for my son. He’s in so much pain I have to give him morphine just to get through the day. His life is so restrictive we have to completely rethink the meaning of life. He’s completely dependent on me. He has a g-tube for feeding, as he cannot eat anything that isn’t the consistency of yogurt. A single rice kernel will get stuck in his throat, despite the many dilatations he’s had. He can’t do anything but sit on the computer and play videogames or watch TV. That is all.

He has Recessive Dystrophic Epidermolysis Bullosa, and if anyone thinks this is a walk in the park, we are making a mountain out of a molehill or exaggerating when we say this is the worse condition you never heard of, or want to judge us when we say we “hate it”, then you need to come over and spend a day with us.

I get so angry when I hear people with much milder forms of EB than my son has, people that have no fears of dying from their condition (unlike my son, who could die at anytime) that can eat (unlike my son) walk (unlike my son), drive, get married, have children, have a job (all unlike my son, who can’t even put weight on his feet without considerable damage), call the person that came up with the quote “The worst disease you never heard of” “stupid” because, as they say, “us actually born with EB think it’s a shitty slogan”, or call names the person which, in name of awareness, was selling the shirts I HATE EB “negative and uncalled for”. As if any of us could actually love this condition which is brutalizing and killing our children. To those mild cases, all I can say is… have some compassion. Why, oh why, do the people that actually have EB can look at these photos above and think it’s an exaggeration or this is NOT the worst disease you never heard of? As I said in my book (Butterfly Child) sometimes I think it’s a lost cause to get people to understand how horrible EB can be, if even people WITH EB don’t get it.

And, guess what? Nicky was born WITH EB, and he wanted my “I hate EB” shirt when I got it, and he says that to me daily nonetheless, he thinks it’s horrible, and the worst as well.

…and that is the truth of the matter…. from our prospective, and, most importantly, from Nicky’s prospective.

Thank you for allowing me to vent.

Love and Light,