All types of EB affect an estimated 1 out of every 50.000 babies born annually. The rarest form of EB is the Junctional subtype.  Reportedly, it affects approximately 1 out of every 7-10 million. It occurs in both sexes equally and is seen in all racial and ethnic groups around the world.

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Welcome to Holland

 
I am often asked to describe the experience
of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." 

And the pain of that will never, ever, ever, ever  go away... because the loss of that dream is a very very significant loss.

Copyright ©1987 by Emily Perl Kingsley. All rights reserved. Reprinted by permission of the author.



Thank you for taking the time to visit my website, and for learning about EB. For more information, please visit:

DebRA
Stanford Clinic
EBMRF

Meet some of Ry's cyber EB buddies and their families:

Our son, Ryan, was born with a rare genetic condition called Junctional Epidermolysis Bullosa (abbreviated- EB or JEB). This condition makes his skin so fragile that it blisters with pressure and friction. His body is wrapped in dressings to prevent blisters and resulting wounds. The dressings also help him to heal. We have to be extremely careful with handling Ryan. Just the slightest touch, or rub, or movement can cause a wound to occur. As an infant, he spent most of his days on special blankets or fleece padding to protect him. Now, he carries an blanket for extra padding when he sits or needs to be lifted. Ryan needs to be scooped up, and can never been picked up under his arms. He never used a jumperoo, never crawled, and learned to roll over after he turned two. Fragile skin and wounds prevented him from doing so.  While these obstacles can sometimes be overwhelming for us as parents, we feel that it is nothing compared to his courage, strength, and ability to overcome.

Ryan is an extraordinary boy--he is fun-loving, and happy. He most always has a smile on his face, through all of his tough dressing changes, he rarely complains.

Having a child with epidermolysis bullosa changes everything, and challenges even the most positive person's outlook on life. Every day with Ryan is a gift. He has forever changed us and taught us how to love life to the fullest, and to enjoy one another. He has taught us bravery, strength, and the power of love and faith.  So many people have offered assistance, prayers, support, and love. Our faith in humanity has been restored. We are truly blessed with this little being--and strongly believe that he was born to us for a reason.  

Ryan has proven even the experts wrong thus far, and we certainly hope that he continues to do so.

Birthday celebrations for people with EB can be extra-special milestones.
                    
Ryan is... FOUR!






Baby Boy!