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When Lucy was born her mother noticed immediately it looked like she had a persistent red rash on her face. Not long after, Lucy was diagnosed with Parry-Romberg syndrome. Parry-Romberg syndrome is a rare condition in which the soft tissue structures on one side of the face atrophy and deteriorate. Little is known about this disease, but it is more common in young girls than boys and often only affects the left side of the face.

After researching on the internet, Lucy’s mother came across UW Health plastic surgeon John W Siebert, MD who has spent 20 years perfecting the procedure that not only repairs the deformity but may change the biology of the disease so the progression is halted. She also connected with a former patient who underwent successful treatment with Dr. Siebert, and decided to make the trip with Lucy to American Family Children’s Hospital in Madison, WI for treatment.

When discussing the surgery with patients and their families, Dr. Siebert uses the example of Build-A-Bearâ„¢. “I tell the kids that, just like building a teddy bear, we’re going to take some of the stuffing from one part and use that stuffing to fill the part that’s missing some,” he says. Dr. Siebert has treated nearly 400 patients with this method, more than any other surgeon worldwide.

Please click here to view Lucy’s incredible journey from home in Australia to American Family Children’s Hospital in Madison, WI.

To learn more about Dr. Siebert and the treatment of Parry-Romberg syndrome, please click here.

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