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This summer I had the opportunity to meet so many of the families and children whom I have come to know and love. One of these, is a very special little guy.

Meet Ben…he is an AMAZING little boy with the personality to match!  I just look at his huge, beautiful brown eyes.  They are gorgeous and they have a story to tell.

Photo Courtesy of Sirena Wiley

Photo courtesy of Sirena Wiley

Last October, Benjamin Joseph Wiley, Jr came into this world missing most of the skin on his hands and on his left foot. His mouth and throat were full of blisters. Ben was born with Epidermolysis Bullosa. The doctors had never seen anything like it. What was causing this trauma and how is it treated? They just did not have the answers and so baby Ben was transferred to Children’s Hospital in St. Petersburg, Florida where he would spend four weeks in the NICU.

Photo courtesy of Sirena Wiley

Because EB is so rare, it was difficult to find anyone who’s could care for his fragile little body. He was constantly covered in Aquaphor in order to prevent any friction that would cause the skin to shear off and blister. He was unable eat by mouth until they were able to control the excruciating pain he was in. As a mother, I cannot even begin to imagine the stress that this caused his parents Sierna and Ben Wiley.

By the time he left the hospital, he had been in the care of over nineteen doctors which included plastic surgeons, a GI specialist, dermatologist, skin teams, radiologist, respiratory team and nenonatologists. He was officially diagnosed with EB on November 8, 2011, his results were however, were inconclusive as to which type he is affected with.  So when he did finally go home, his parents were still left with many unanswered questions. A bittersweet moment being able to bring your baby home and yet being scared to death of all of the unknowns.

Ben Jr. Has been such a tremendous blessing to his parents, making them a stronger as a couple and stronger in their faith. They do not know what the future holds for their son, but they are determined to fight for him…doing whatever it takes.

Ben will turn one this October, a pretty special milestone to those who are born with EB. His parents still,struggle on a daily basis to cover expenses for his ongoing care. Please take a moment to help support this family and honor Ben on his first birthday. An online fundraiser has been set up HERE

If you are in the area, you can join in the celebration.  The details are are all listed in the Facebook event Honoring an EB Soldier. They will be hosting a wonderful party that will include an auction to raise funds for DebRA

You can also follow Ben’s story and receive updates on Facebook.

I want to thank Ben Jr.’s parents for allowing me to share his story.  It is my hope that his first birthday will be a smashing success and that he receives the support that is so needed and deserved.