We knew there would be a chance: a 50 percent chance to be exact. But the whole nine months I
knew. I had seen her in my dreams and I knew this precious little life inside me would endure a life
marked with struggles different than those of her peers. When she was born I felt an overwhelming
peace that God would watch out for my little one. That she would grow to do amazing things in spite of
her disadvantages. This little girl was born into a family that had the resources to give her the best care
Quickly, I found out not all children are so lucky. If one out of every 20,000 births in the United
States were diagnosed with EB, there must be children out there in the rest of the world who do not
have access to medical care, or worse, who do not have a loving family to advocate for their care.
As I started to connect myself with the EB community, I started to find these sweet children
across the world with EB who for one reason or another did not have a family. No mommy to kiss their
tears during bandage changes. No daddy to snuggle them tight. No brothers or sisters to laugh and make
memories with. My heart broke. Something inside me needed to embrace those sweet children and tell
them they are not alone; someone who doesn’t even know them loves them and will fight for them.
I am not the only one who has felt this deep in my soul. There are many wonderful people who
feel the same as I do.
But we need more.
EB is such a rare disease that many physicians have never heard of it, let alone seen it. We need
people who can bring awareness to this devastating disease. Awareness leads to acceptance and
understanding. Awareness leads to research. Awareness leads to new treatments and cures.
Awareness leads to hope.
If you would have asked me several years ago how I felt about EB, I would have been indifferent
at best. Before I met my husband I had no idea what EB was. But now I can’t imagine a life any different.
I cannot imagine not being aware of those sweet children who need our help. Because I love someone
with EB… I must fight to provide better lives for those without advocates.
Guest blogger: Caitlin Pettersson (Board Member)