Boy Born Without Skin Is Wrapped in Bandages Each Day

The article does not give any indication as to whether or not the parents knew beforehand that they, and their other daughter, were carriers of the disease.

However, if I knew that I was a carrier of such a disease I would absolutely assure that I did not have children.

I pity you for your stupidity.....our adopted son also has eb.....it is very painful....requires constant care.....he is the center of our universe. He is now 10 years and taking one day at a time. I am so thankful he wasn't born to someone as ignorant as you. If this is the only way you can draw attention to yourself......get a life....at the very least get a book and learn to read !

Heather, I take care of an EB child. His parents lost an older child to EB a couple of years ago. Please do a Google search on Dr. Wagner at the University of Minnesota. He has had success, after isolating the gene, with treating kids who have this.

At first I thought the same thing, but then I thought maybe they didn't know they were carriers until after this child was born and they were all tested.

They probably didn't know they were carriers until after he was born.

Cory---Many times you don't know youre a carrier of such diseases. I found out in my 30's that I have a rare deformity in my back bones that is hereditary--I had my children checked for it as soon as I found out and one of them has it. The burden of guilt I feel is horrible. I am 46 years old and handicapped. I could have inherited a disease from my ancestors from many generations back. You just dont know. Cancer runs thru many families-do you think that should make a couple not want children because there might be a slight risk? You just dont know....

I bet the real reason you're childless is because no one would mate with a person as hateful as you.

How does that make them selfish? They wouldn't have known that they were carriers of the disease unless they had some sort of genetic testing done. And just because someone carries a gene doesn't necessarily mean that it will be expressed when they have offspring. Good Lord, did you ever learn about Mendel and his punnett squares? Dominant vs. recessive? You said it yourself- you know nothing about your father's genetics, so why should you expect them to know about their own?

EB runs on my wife's side of the family, and the symptoms have been getting milder with each generation. My kids have a very mild form that causes them to blister only a bit easier than most. If we decided not to have children just because of the EB, we would have missed out having two great kids. Your choice not to have children is fine, but it can't be a decision based solely on the genetic roulette wheel. Otherwise, people would only be having children by accident.

child free... now that's selfish

God Bless this little baby and his family.
I look at my very healthy beautiful children and know I am a very very Blessed Mother.

Oh God, not one of the childfreeks. How typical.

As has been said here, you have no idea that the parents knew anything about this condition until their second child. Indeed, it is highly unlikely that that they had any clue that each was a carrier of this very rare condition.

My son has this disorder and its not as rare as they say...but it is very painful for them as far as the cleaning of the badge changes goes..he's a normal 12month old hes roughs around and very happy, i hope her son gets better soon.

If everyone that didnt know abouut their families genetics decided not to have children most of us would not be here. You sound like a selfish person who can only think of the negative aspects of life. In my opinion you did not have children because you were not meant to. Now you are bitter and alone so u have to critisize other families.

I do not see how wanting to bring a new life in this world can be selfish. It is very sad that this little boy and his family have to go through this but he is here because he is meant to be here. Plus the article stated that his conddition is improving. With any luck he will grow up to be a happy healthy little boy and do something great in his life.

you are so ignorant. The couples who have a child with EB do NOT know they are carriers. My husband & I had our 1st daughter in 1972. She was fine. Our 2nd daughter was born in 1976. She had EB we lost her 4 mo later. thats when we found out what it was. so shut your mouth when it comes to things you know nothing about.

well if you had read the comment before yours THEY HAD NO CLUE!!! and she was on birth control...

I'm also childfree, although not because of genetic issues. It's funny how society labels us childfree people as "selfish", yet the ones who are truly selfish are those who are carriers of genetic diseases who choose to breed anyway.

We harm no one by choosing not to have children, quite unlike those who bring children into the world knowing there is a chance of them having a horrible disease that they took the risk of passing on. That's what I call selfish.

Another hateful person...They DIDN'T KNOW they were carriers.
Thank god you don't have kids.

For godness sake, isisreptiles, this isn't about your decision not to have children. This is about parents who, unbeknownst to them, both carried a recessive gene that gave their child this condition.

The decision to have or not have children is no more or no less selfish than any other. We all do what we judge will make ourselves happy. What is selfish is to make a situation like this revolve around your own choices in life, rather than be about the situation at hand.