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 question it?

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!

-Lia Burton
Lia@redsurvival.org

This page was created October 1, 2008