On August 6, 2018 Adalyn (age 5) was diagnosed with Parry Romberg Syndrome. This syndrome was not easy to diagnose. Addie and her family visited multiple specialists and she had to go through several tests to receive a diagnosis. Parry-Romberg syndrome is a rare, acquired disorder characterized by slowly progressive shrinkage (atrophy) of the skin and soft tissues of half of the face (hemifacial atrophy). The exact cause of Parry-Romberg syndrome is unknown and appears to occur randomly. When Addie’s parents learned of her diagnosis they were told that there is no treatment or cure. After talking with several parents with children who have PRS and searching within a Facebook support group, we knew we had to schedule an appointment with Dr. John Siebert in Madison, Wisconsin. People have traveled from all over the world to be operated on by him. He performs a unique operation called a microvascular free flap tissue transfer. This is the only treatment known to halt the progression of the disease. On September 26, 2018, they drove to Madison, Wisconsin to meet with world famous Dr. Siebert. After the appointment with Dr. Seibert, they decided to move forward with the microvascular free flap tissue transfer surgery to treat Addie's PRS.
Addie’s surgery was on November 29th at American Family Children’s Hospital in Madison. The surgery was approximately 10 hours long. Dr. Siebert and his team removed healthy tissue from Addie’s back and transferred it to the right side of her face (which is the side affected by PRS). This was no small task, Dr. Siebert had a large surgical team helping him. When the tissue was harvested from her side, they also removed blood vessels. The team used a microscope to attach the blood vessels from the healthy tissue to the blood vessels in Addie’s face. This will keep the tissue alive and allow it to grow with the rest of her face. This surgical intervention halts the progression of PRS, the new tissue will not be affected. Addie woke up to 16 bolsters on her face (these held the tissue in place while it healed) and two drainage tubes, one that entered behind her right ear and went under her skin to her chin and the other on her right side where they harvested the healthy tissue from. Addie also has a long scar from the tissue donation site from the top of her right shoulder and down her right side. After surgery Addie spent 24 hours in the Pediatric Intensive Care Unit. During that time the nurses had to check the pulse to the new tissue with a doppler every hour to be sure that the artery was working well. There were a lot of little bumps during her recovery at the hospital but she always powered through them with a smile on her face. The swelling to her face peaked on day 3 after surgery then it began to decrease each day. After seven nights in the hospital Addie was discharged. She remained in Madison an additional night so she could have her bolsters and the drain removed from her side before her trip home. Addie’s surgeon was very pleased with the outcome thus far. As each day passes her swelling continues to decrease and her activity level increases. Addie had a smile on her face every day of this journey.

Addie had a second surgery on June 13th 2019. In this revision surgery the new tissue that was placed on her face had to be adjusted. Her surgeon said that the new tissue had not been affected by the disease. Addie only had to spend one night in the hospital and is recovering well. Even though we corrected the atrophy, Addie will always have PRS as it is an autoimmune disease. Our next step is to see a rheumatologist in Pittsburgh this fall for ongoing care.

We would like to thank everyone for their outpouring of support, love and prayers for our family during this tim

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