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PLEASE NOTE: LEE ANN HAS A MILD FORM OF CROUZON SYNDROME. TO BETTER UNDERSTAND EXACTLY WHAT CROUZON SYNDROME CAN DO, PLEASE VISIT www.crouzon.org AND GO TO THEIR PHOTOS AND STORIES PAGE.

I was born in November 1978 in Denver, Colorado. At the time of my birth Crouzon Syndrome was not yet apparent by sight. As I grew older, my eyes began to protrude and mild characteristics of Crouzon Syndrome started appearing. My parents took me to multiple pediatricians all of whom wanted to check me for a thyroid problem (because of the bulging eyes) and told my parents that the mild deformities were "just the way I was born." Around approximately eight years of age, my eyes where protruding so much that I became unable to completely close them, causing a red line across my eyes. I was also diagnosed by an ophthalmologist as having lazing eye. Then, at the age of ten I started experiencing severe headaches and dizziness soon followed at the age of eleven. In late June 1980, after seeing numerous pediatricians, my parents took me to one more pediatrician because of the severe headaches and dizziness. This pediatrician immediately referred me to plastic/reconstructive surgeon Dr. Richard Albin. Dr. Albin immediately diagnosed me with Crouzon Syndrome. Dr. Albin then sent me to pediatric neurosurgeon, Dr. Larry McCleary at The Children's Hospital of Denver. Dr. McCleary performed multiple X-rays, MRIs, and CAT scans. Late that evening Dr. McCleary phoned my parents informing them that the MRI showed that I had extreme pressure on my brain. This pressure had caused thumb sized holes in my skull along with multiple indentations. My brain was literally eating away my skull. Dr. McCleary informed my parents that without surgery the results would be brain injury, decreased intelligence, loss of ability to speak and possibly fatality.

On July 1, 1980, I had my first surgery. Dr. Albin and Dr. McCleary along with their team of doctors and nurses performed the surgery at The Children's Hospital of Denver. For this surgery they made an incision from ear to ear, removed the forehead portion of my skull and using titanium screws and plates along with bone from a bone bank increased the size of my skull by approximately three inches. At one point during the surgery Dr. McCleary went to the waiting room and told my parents that they had my brain in one room and my skull in another. My brain had grown onto my skull so severely that the surgeons literally had to scrape my brain from my skull. After the surgery I was in such fragile shape that just blowing my nose or sneezing could have caused huge amounts of damage.

On December 20, 1980, I had my second surgery. The second surgery, which was also performed by Dr. Richard Albin and Dr. Larry McCleary at The Children's Hospital of Denver, completed the expansion of my skull and began work on building my orbital rims (eye sockets) as well as cheekbones, again using bone from the bone bank. The doctors used the same incision to perform this surgery.

The third surgery came in 1992. This surgery, performed by Dr. William Brown at Saint Joseph's Hospital in Denver, Colorado, was to repair cheekbones that had been absorbed as well as continue building of the lower eye orbits. Because the bone that was used from the bone bank absorbed, doctors decided to remove one of my ribs along with fatty tissue from my stomach to rebuild my cheekbones and lower eye orbits. Incisions were made under my eyes as well as through the outside upper gums in my mouth. This surgery was the most painful surgery of all.

My fourth, fifth, and sixth surgeries were performed in 1993, 1994, and 1996, respectively. These surgeries consisted of repairing and replacing screws and plates that had worked themselves loose as well as miscellaneous reconstruction. Dr. William Brown at Saint Josephs Hospital in Denver, Colorado performed all these surgeries. I still to this day truly have four loose screws.

My outlook for the future is perfect! I am completely finished with surgeries! If I wanted to, I could have the remaining loose screws fixed, but I choose not to.

IF YOU WOULD LIKE TO POST YOUR PHOTO AND STORY, PLEASE EMAIL IT TO president@crouzonsbridge.org.

NOTICE: Pictures and information on this website are provided to benefit people who are affected by Crouzon Syndrome. Under no circumstance may any of the pictures or information be copied or used without written consent from Crouzon's Bridge of Hope Foundation. All pictures and information on this site are protected by United States copyright laws.

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