Wasting Away: 9-Year-Old Boy Suffers From Rare Disease

Nine-year-old Hank Gibbs, of Sacramento, Calif., recently had the finishing touches put on his tissue transfer surgery since the little-known Parry Romberg Syndrome melted away all of the fat on the left side of his face, leaving nothing but skin and bone. Now, he has fat in his face and the scars to prove it.

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    Hank's face shows signs of Parry Romberg Syndrome

    Hank Gibbs was diagnosed with Parry Romberg Syndrome in the summer of 2008 after two years of misdiagnoses. But the standard treatment, which was to wait until a patient's fat had completely wasted away before intervening surgically, didn't work for Hank's mom, Terri. Then, she found Dr. John W. Siebert, who not only intervenes early to stop the progression of the disease, but has also treated hundreds of Parry Romberg patients. 
    Terri Gibbs
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    Hank before his first surgery

    Hank Gibbs flew with his family to New York for a microsurgical free tissue transfer in the summer of 2009 to transplant healthy tissue from his back to fill the areas on his face that had wasted away. Terri waited with her son before Dr. Siebert began the 6 - 8 hour operation. "This was a big one," Terri said.
    Terri Gibbs
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    Hank after his first surgery

    The surgery was successful and the fat transferred to Hank’s face has remained healthy. But he didn’t quite understand why he needed a surgery to “change his face.” After the surgery, Hank had drains placed in his head and back to filter out blood to prevent swelling. It wasn’t easy, and he really didn’t like the yellow “popcorn” stitches along his nose, lip and jaw where Siebert made incisions to create a skin flap and fill in the tissue. But once the drain and stitches came out and he went home with two full cheeks, his mom showed him pictures of people with Parry Romberg Syndrome who didn’t have surgery. “He never questioned it again,” Terri Gibbs told FoxNews.com.
    Terri Gibbs
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    Hank before his second surgery

    Six months after the procedure, Hank returned to New York in December of 2009 to have revision surgery, which is something Dr. Siebert urges all of his patients with Parry Romberg Syndrome to have done. “What I usually do is the microsurgery, and then, wait six months, and do a little fine tuning,” Siebert said. “You just want to make it flow well from side to side.” Siebert moved around the transferred fat to make the left side of Hank’s face match the right side as close as is possible.   
    Terri Gibbs
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    Hank after his second surgery

    Hank recovered quickly from the revision surgery in December, and was able to return to school within two weeks. The incision above his left eye was made in this surgery to give Hank an eye lift. Dr. Siebert took tissue from underneath Hank’s left shoulder blade and transferred it to his face in the first surgery in July.
    Terri Gibbs
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    Hank before his third surgery

    On a trip to New York for his second revision surgery on July 20, Hank, his mom Terri, his father Jeff and his two younger siblings Charlie and Lucy, visited Times Square.
    Terri Gibbs
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    Hank after his third surgery

    Hank rests his head, still hooked up to a drain, the night after his second revision surgery on July 20, 2010, to fine tune the left side of his face. It was a more invasive surgery than the first revision because Siebert went back into the original surgery site to give Hank more tissue under his eye. He also moved more fat to his lip and cheek. The surgery was successful and Hank healed even faster than his last surgery.
    Terri Gibbs
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    Hank takes New York

    While in New York for his third surgery in July, Hank got to take in the sights and sounds of the city from the top of Empire State Building. Hank doesn’t quite understand everything about his disease yet, but he hasn't let it hurt him. In fact, he has taken his mother's lead by spreading the word about Parry Romberg Syndrome to his fellow classmates in an assembly earlier this year. "He says he feels like he's put on this earth to help others," Terri Gibbs said. "He knows that by telling his story, he's helping other people."
    Terri Gibbs
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