|Hey Teeter’s Page visitors! My name is Lia, and I
created and run
www.REDsurvival.org, a website to help people get through the
Rigid External Distraction (RED) procedure for craniofacial kids. I
hope you’ll stop by sometime! Here’s a bit about me if you’re
I was born in Redwood City, CA in 1988. The doctors said I had
Pfieffer’s Syndrome, but the name of the condition was about all
they knew. One of them went as far as to say that I was severely
mentally retarded. The hospital I was born in didn’t think any
surgery was necessary and refused to pay for anything, and of
course, if the hospital says something’s unnecessary, who’s going to
In what I can only credit to God’s amazing divine providence, one
of my mom’s cousins was a medical student at the nearby UCSF medical
school at the time. She had just done a stint under Dr. Michael
Edwards, one of the best pediatric neurosurgeons in the country. His
schedule was completely overbooked, but she was able to convince him
to meet with me and my parents during one of his lunch breaks. He
said I definitely wasn’t mentally retarded, but I definitely needed
surgery right away.
The hospital and the insurance company continued to refuse to pay
for anything, but money took a back seat and I had the sagittal
synostectomy done anyways. According to Dr. Edwards, when he made
the cut and opened up my skull, my brain just expanded as if it were
a sponge that had been bunched up together until then. I shudder to
think what I would be like mentally today had I not had that surgery
when I did.
The hospital bill without help from insurance was enormous.
Donations flooded in from relatives and our church; they even had a
garage sale for me. After lawsuits were threatened and angry letters
were sent from my surgeons to the lawyers, the hospital finally
settled and paid for the surgery. It was, of course, only the first
of many many surgeries to come. But the thing is, things always
worked out – it’s like every medical episode became an opportunity
to witness God’s miracles.
When I turned six, my family moved from the bustling Bay Area to
a small town in Oregon. As much as I love the Bay, I am so grateful
to have grown up in a small town where virtually everyone knew about
my condition. Though I still got teased and had to put up the
unrelenting stares of strangers in public places, I was incredibly
blessed with a ton of friends and classmates who wouldn’t let anyone
pick on me as long as they could help it. Whenever I had surgery,
they would send me cards and emails; one of my middle school
teachers even stopped her class to hold a few minutes of silence to
“send good energy” to me during particularly major surgery. When I
look back on my childhood, I’m still amazed to realize how much
support I had.
My parents always supported me too, whether that meant taking big
chunks of time off work to be with me after surgeries and medical
appointments, or listening to me cry and whine about how much I
hated the kids who made fun of me. I know a lot of you on this site
are parents and I have to say, major kudos to you for all that you
do. Kudos to siblings too; my younger sisters have always been
patient when they’ve had to stay with relatives when both our
parents needed to fly out of state with me for surgery or when they
are asked nosy questions about why their sister looks so weird. They
are two awesome girls.
Anyways, I had a lot of surgeries growing up (20 and counting!),
but I won’t bore you with my entire medical history. However, I will
quickly mention that when I was thirteen, I went through the RED
procedure, which many of you have (or will) go through at some
point. I had several complications and it was one of the hardest
medical ordeals I’ve ever been through in my entire life, but the
whole experience was definitely worth the benefits of getting to
breathe normally. After finally finishing the RED process, I created
a website for other people going through RED; you can visit the site
at www.REDsurvival.org. Please stop by if you get a chance!
I’m now a junior at the University of Southern California on a
Presidential Scholarship and I absolutely love it here!
Hardly anyone at USC knows about my medical history, so it’s
basically the first time in my life I’ve been able to pass as
“normal.” Other than the hearing aid and scar lines people don’t
seem to know anything’s wrong, so it been pretty sweet!
Anyways, thanks so much for checking out my page guys! Please
feel free to email me or visit my site anytime!