"It's best to wait until this disease does it's damage to her face, and then we'll try to fix it later". Really?
Kelley had "differences" as a baby. Patches of grey hair, a white spot on her neck, missing eyelashes on her right lower lid, and a funny little twisted nose. We didn't notice that all of this was on her right side. Later, these idiosyncrasies would be tied together in these ugly words: Parry Romberg Syndrome. After scores of appointments and visits to "specialists", a geneticist at Children's Hospital in Denver gave us the news.
At 9 years old, her disease quickly accelerated, and the little things became big things. Headaches plagued her every day, along with cruel teasing and comments from classmates, and rude lingering stares from strangers. Half of her face was becoming distorted, sunken, discolored. Our once bubbly, outgoing daughter was becoming introverted and depressed. Our hearts were breaking for her...as we felt helpless.
Scores of doctors, who had obviously accessed the same scarce information on the internet that we had, were of little help. "Wait until her face is fully grown, and this disease 'burns out', and then consider surgery to repair the damage". Wait....wait...wait...
We stumbled onto a small on-line support group called The Romberg Connection. It was there that we learned about Dr. Siebert. According to some members, he was the "go-to guy" for early intervention. And so we did. Dr. Siebert's plan was to re-establish a blood flow to half of her face, feed in some of Kell's own healthy tissue, and STOP more atrophy from occurring This spelled HOPE. After one 9 hour surgery, and several follow up procedures, Kelley had a much more symmetrical look and felt much better about herself.
Since then, we too continue to share our story with others, hoping that more people might find their way to Madison, WI. Dr. Seibert is a skilled surgeon, and a wonderful caring man, who understands and has helped hundreds of people with Parry Romberg Syndrome. We will be forever grateful to him for making a difference in our daughter's life.
Donna Sperry (Kellbell's mom)
"It's best to wait until this disease does it's damage to her face, and then we'll try to fix it later". Really?
Kelley had "differences" as a baby. Patches of grey hair, a white spot on her neck, missing eyelashes on her right lower lid, and a funny little twisted nose. We didn't notice that all of this was on her right side. Later, these idiosyncrasies would be tied together in these ugly words: Parry Romberg Syndrome. After scores of appointments and visits to "specialists", a geneticist at Children's Hospital in Denver gave us the news.
At 9 years old, her disease quickly accelerated, and the little things became big things. Headaches plagued her every day, along with cruel teasing and comments from classmates, and rude lingering stares from strangers. Half of her face was becoming distorted, sunken, discolored. Our once bubbly, outgoing daughter was becoming introverted and depressed. Our hearts were breaking for her...as we felt helpless.
Scores of doctors, who had obviously accessed the same scarce information on the internet that we had, were of little help. "Wait until her face is fully grown, and this disease 'burns out', and then consider surgery to repair the damage". Wait....wait...wait...
We stumbled onto a small on-line support group called The Romberg Connection. It was there that we learned about Dr. Siebert. According to some members, he was the "go-to guy" for early intervention. And so we did. Dr. Siebert's plan was to re-establish a blood flow to half of her face, feed in some of Kell's own healthy tissue, and STOP more atrophy from occurring This spelled HOPE. After one 9 hour surgery, and several follow up procedures, Kelley had a much more symmetrical look and felt much better about herself.
Since then, we too continue to share our story with others, hoping that more people might find their way to Madison, WI. Dr. Seibert is a skilled surgeon, and a wonderful caring man, who understands and has helped hundreds of people with Parry Romberg Syndrome. We will be forever grateful to him for making a difference in our daughter's life.
Donna Sperry (Kellbell's mom)
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| Kelley and Dr. Siebert after surgery |