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It was about a year ago when I came across a picture that completely drew me in.  It was an image of this beautiful little girl with the most AMAZING eyes, big gorgeous brown eyes…this is Savvy…

Savannah was born on November 8, 2010 and despite having no complications and a very quick delivery, something was wrong.  Within seconds, the room door slammed open and three NICU staff came in and swept Savvy up.  It was happening fast, and her parents knew something that things were not right. The nurses asked if they wanted to hold her, but insisted it could just be for a minute because they needed to take her away for some tests.  They handed Savvy to her mother Angel, and in that moment she knew that there was something desperately wrong.

Savannah had no skin from ankles down to toes or on her side.  It looked almost as if she had been shredded.   Before Angel could even find the words, they whisked her away and left her mommy and daddy without their daughter and no answers.  Confused and scared.

The doctors had not seen this and had no answers. Savvy would need to be transported to another hospital, it was the only way to determine what was wrong.  Angel was given Savvy to hold and through her tears, she took pictures and fed  Savvy not knowing what the future would hold.  What was going on, will she be okay?  Countless doctors and nurses came in to express their sorrow to Angel and her husband, but that certainly did not ease the pain or anxiety they felt as they watched Savvy being taken away in an isolette, hooked up to what seemed like a million of machines.  They signed some papers and blew a tear infused kiss their, their beautiful baby, and then she was gone.

The next week was spent with a sea of doctors and nurses and medically licensed people scratching their heads until finally they received the news.  Savvy had Epidermolysis Bullosa, a devastating blow to any parent.  In that moment, their lives were changed.  They now had to learn about the vital wound care that their daughter would need and all of the special care that would be required.  Finally though, Savvy got to go home to the family who was waiting to love her.

Almost two years later, Savvy is as cute and as sassy as ever! When I saw Savvy in person for the first time I was again captivated by her amazing eyes.  Then she held me with her personality and her sass!  She is such an incredible child who is undoubtedly loved and cherished.  I watched as Angel and Alberto cared for their little princess and it was truly so touching to watch this mommy and daddy work in unison.

Savvy is incredibly determined and she will do great things in her life…she will not allow EB to define her and it will not slow her down.

I think that her Mommy says it best: “Our daughter grows, and smiles and throws things, but she also bleeds and suffers and longs for walking abilities. And we love her. And she truly changed our lives for the better.”

Through the smiles, there is pain and it is a pain that no one should ever have to endure.  Savvy is one of many who suffer, one of many who need your help.  You can find out more about EB by visiting DebRA’s website www.debra.org You cna help to make a differnece in the lives of kids (and adults) like savvy by educating yourself, supporting those affected and raising awareness.  With your help, EB will no longer be “The worst disease you NEVER heard of”.