Andy Bartkowski - Winter 2008

My name is Andy Bartkowski. I’m 49 years old and have bi-lateral facial paralysis as well as mucormycosis, a rare but often fatal disease caused by fungi. It is sometimes called zygomycosis or phycomycosis.

This definition of mucormycosis describes it best:
Rhinocerebral mucormycosis is an infection of the nose, eyes, and brain. The fungus destroys the tissue of the nasal passages, sinuses or hard palate, producing a black discharge and visible patches of dying tissue. The fungus then invades the tissues around the eye socket and eventually the brain.

In 1978, because I had diabetes, worked two jobs, partied and didn’t watch my blood sugars, my immunity system began to decline. One day, I felt excruciating pain in every nerve within every tooth. My head became so swollen that I felt ashamed about how I looked. When any of my friends would visit me, I wore a towel over my head to cover the deformity. I didn’t know I was actually dying.

I recovered but not without Amphotericyn B, nicknamed “Ampho the Terrible” because it gives you malaria-like symptoms, cold sweats and fevers of 105. A single dose could give you phlebitis.

But the hardest words I ever heard a doctor say was I would never smile for the rest of my life. What affected me more was the paralysis, which was predominantly on the one side of my face. When my friends kissed me, I could not feel a thing. I was severely depressed for a long time.

In 1981, I underwent a muscle transfer. It was not successful; the damage left by the infection, the arteries and veins was extremely brittle and blood supply wasn’t good enough. Even though it did not work, it made my face tighter, which gave it a better appearance, which in turn gave me confidence.

My plastic surgeon now is Dr. Scott Bartlett, who has performed several facia lata slings on me. I attended his lecture at Children’s Hospital of Philadelphia, where I heard him speak about procedures that could rebuild a child’s face. I asked if I could help any kids. He introduced me to CCA.

I went to my first CCA retreat in Denver. What blew me away is how much fun the children and their families had. There were plenty of great activities planned such as going to zoos, parks, ice cream parties and the ever-popular dinner dance. Oh yes, and many new friendships.

What is amazing, 10 years later, is that the kids I met have now graduated high school and moved on to college! Do you know how hard it is to undergo 30 or more surgeries and graduate on time?! They succeeded because of the unconditional love within each of these families.

Every year, going to the retreat is like getting refueled for another round. Each time I met a new family with a child who has a different syndrome, they would tell me, “We thought we were the only ones!” It wasn’t until I contacted CCA that I met other parents and children who were going through the same thing I did.

We aren’t the only ones. Like Char Smith says, the doctors take care of the surgery, and the kids of CCA encourage and support each other pre and post surgery.

I’ve had more than 25 surgeries, and these kids may have had 10 to 100 by the time they were 16. Yet they are all happy at the retreat. Most of all, they have dignity.

You may notice that I don’t smile for the camera. I felt embarrassed about that until I became a part of CCA. Now I smile through hundreds of happy faces!

If you would like to share your story with CCA, please send an email to Annie Reeves at areeves@ccakids.com. If your story is chosen, with your permission, we will edit and publish it in the CCA newsletter, on the Web site or use it for public awareness programs. Not all stories will be selected.

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