harley
My name is Harley and I was born on January 14th 2010. I have a rare condition
known as Sturge-Weber syndrome. This syndrome affects about 1 in every 100,000
infants born. I have a large port wine birthmark on the left side of my face which
extends all the way to the back of my neck and a little on my chest as well as a small
spot on my right cheek. I have glaucoma in my left eye and seizures. I experienced my
first seizure when I was one month old; it was just a twitch in my right arm. My seizures
mostly consist of focal ones but I have had grand-mal as well as petit-mal.
I have been developing normally for a child of my age, and only experience a little
weakness on the right half of my body which makes it harder to walk and crawl (but I
butt scoot like it’s my job). I’m followed by a neurologist, ophthalmologist and have laser
treatment to help lighten my port wine birthmark. My mom, dad, and big brother Gavyn
are my biggest fans. It was very scary for my mom to hear the word hemispherectomy,
but once she started researching and hearing all the positive stories of other families
who went through the surgery it made it easier. Right now my glaucoma is controlled
by medications and pressure is fantastic. My seizures seem to be controlled for awhile
then we have to adjust meds. So far the doctors feel I’m not a candidate for the
hemispherectomy at this time but are continuing to observe and run tests to help in any
decision that may have to be made.
Note From Mommy: I don’t know what the future holds for my little girl, all I do know
is we have a great team of doctors, a wonderful family, and rare and wonderful support
system in the Sturge-Weber Foundation. It is so much easier when you know you’re not
alone when something is bigger than you are. Never stronger but bigger.
Harley was born ten days early, due to the fact that I had developed a condition
known as cholestasia in which the gall bladder is working incorrectly which causes
bile to over flow into the blood stream. It can be fatal to mother and baby so the only
cure is delivery. My pregnancy was very normal and healthy otherwise. I did everything
right so it was a huge surprise when Harley was born and we were told there might
be something wrong with her. I was in the hospital for four days and during that time
I saw a lot of different doctors of different specialties, and this is when I met Harley’s
neurologist who uttered those three very familiar and scary words Sturge-Weber
syndrome. When I started researching the syndrome it became very real and scary.
There were words I didn’t understand let alone know how to pronounce and then came
the ones I understood very well. It took a lot of time, doctors’ appointments as well as
researching and talking to other parents in my shoes to realize I could work with this. We
could survive it and put up a winning fight.
16
“ It is so much easier when you know
you’re not alone when something is
bigger than you are. Never stronger but
bigger.”
The Sturge-Weber Foundation