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.