So, the morning Rowan was born, it was the
best day of my life. We had like a little playlist that we had
them play in the delivery room, and I think we were like into the third song, which was "Sea
of Love," and that's when Rowan was brought into the world. She had some small things on her body like
redness under her fingernails and some, what looked like blisters, almost, on the surface of her
eyes. But, they were very small, and I was assured that they were just weird
newborn things. And, I picked up her foot, and I noticed that
she had a nickel sized wound on her heel. She was getting, um, bleeding wounds from
her diapers. And I thought, this is crazy. How could diapers
be causing my child to have wounds that are literally bleeding? At first, the nurse was like well you just
need to handle the baby more gently, and, um, which is just maddening to think about
now. A doctor came in and said, "Basically, she
either has a serious infection or she has something called Epidermolysis Bullosa." And, um, he said it so quietly I didn't even
know what he had said. And basically just expressed to us how important it was that we don't try
to Google it. You know, we were like, maybe it'll go away
over time, and you know, this is most likely a lifelong thing. When she started having wounds appearing,
it quickly became like basically like a nightmare and the worst day of my life. "Rowan, what do you want to watch?" Being able to get insurance coverage for a
child who requires probably between ten and fifteen thousand dollars a month in bandaging
supplies was incredibly difficult when Rowan was born. Instead of just being a parent, you have to
be a nurse, a nutritionist, a receptionist. You have to know about health insurance and
be an advocate and all these things. It means so much to us that with the rarity
of Rowan's disorder that there is an organization that is dedicated to curing her disorder. Knowing that there are people that we have
never met, people in lab coats who are trying their best to figure out this technology that
could potentially cure so many horrible disorders and diseases, it gives me hope. I am very hopeful that we will find some sort
of a treatment that's going to help Rowan's daily life and quality of life coming up with
gene therapy in the next few years. I am extremely hopeful. I have hope. I have to have hope. I have to hold on to, to hope. I feel like EBRP is helping to get the word
out that there's children who need help. We need a treatment. We need a cure for children like my daughter. "Hi!" "I'm here!" "You're here!" Rowan is the sweetest little girl you'll ever
meet. She's beautiful the way she is, and not in
spite of her EB, but with her EB. She's like every other three year old in just
that she's curious about everything around her. You would never know that she has what she
has if it weren't for the fact that she's, she's bandaged. She loves dinosaurs. She loves unicorns. She's super outgoing and really funny. My greatest hope for her would be that she
is able to be happy, to live her life and not be constrained by EB. I want her to be happy and I want her to be
happy with herself and who she is and as comfortable as she can be with the skin that she's in.
