Meet Rowan: 2019 Family Advocacy Day Champion
Rowan is participating at 2019 Speak Now for Kids Family Advocacy Day from June 25-26 in Washington, D.C. During the event, Rowan will share information about her health journey and the importance of children’s health care with members of Congress. Below is her story.
Rowan is a super energetic 4-year-old who loves to cook cheese quesadillas, go horseback riding and swim in the pool. You can always find her laughing and telling jokes, despite the pain she experiences every day.
Rowan was diagnosed with recessive dystrophic epidermolysis bullosa as a newborn, which means that she is missing the “glue” that holds her skin to her body. The surface of her body can blister and shear off leaving wounds like second-degree burns, so Rowan must be bandaged from the neck down to cover wounds and prevent infection.
Dell Children’s Medical Center has cared for Rowan since she was born. Because epidermolysis bullosa is a progressive disorder, Rowan's condition has continued to require more symptom management and care as she’s gotten older. Rowan has been treated for esophageal blistering that was obstructing her airway, sepsis, and painful wounds. She has also been under sedation for bandage changes to lessen her anxiety.
Despite having epidermolysis bullosa, Rowan loves being silly just like other kids her age. She also loves superheroes, specifically Wonder Woman. She dresses up like Wonder Woman and pretends to fly around her apartment to help with chores, saying “I can do it, I am strong!”
Join us in welcoming Rowan to 2019 Family Advocacy Day!