Changing Children’s Lives

Sen. Hillary Rodham Clinton (left) presents a regional Jefferson Award to Linda Rozell-Shannon (right) and her daughter, Christine (center).

In 1994, I gave birth to a beautiful baby girl. The doctors had said I would never have a child. But they were wrong. Without medical intervention, I got pregnant. Soon after Christine was born, a lesion began to form on her lip. The diagnosis was a hemangioma. I was told that the hemangioma would soon disappear and that no treatment was necessary. When the lesion continued to grow, and Christine’s lip became misshapen and hung heavy from the weight of the tumor, I refused to believe that nothing could be done for her.

I began a fruitless search for information. Like so many parents before me, I soon discovered there were no books, no Web sites, no organizations to help me find answers and treatments for my daughter’s condition. I knew one thing: God gave me Christine. I knew He would bring good out of this situation.

I prayed and made a deal with God. If He would help me find a doctor who would make my daughter look normal, then I would dedicate my life to helping other parents find the proper treatment. Two months later, my prayers were answered, and I discovered a doctor who was pioneering treatment for vascular birthmarks in the most unlikely of places—Little Rock, Ark. Dr. Milton Waner had come to the United States by way of South Africa. An ear, nose and throat specialist, he had become interested in the field of vascular birthmarks and tumors.

Waner, too, had become frustrated with the lack of treatment for children with fast-growing hemangiomas. He knew that the subject was not taught in medical schools, so if a child were to be treated, the physician needed to take a special interest in this type of birth defect. He also knew that there was a real need, with 40,000 new cases of children born with a vascular birthmark or tumor requiring a medical opinion each year in the United States. Waner assured me that he could make my daughter look normal in a single two-hour outpatient surgery. He did.

I knew from the moment we met that Waner and I would form a lasting bond that would change the world for families affected by a vascular birthmark. God had kept His part of the deal, and now I had to keep mine.

Together, Waner and I formed the Vascular Birthmarks Foundation (VBF), which has become the leading nonprofit in the world for children and adults affected by a vascular birthmark or tumor. We collaborated to write the only book, to this day, for parents on the subject, Birthmarks: A Guide to Hemangiomas and Vascular Malformations. Currently we are updating this book, and a revised version is scheduled for release in the winter of 2006.

In addition, VBF now has chapters in Israel, Europe, New Zealand, Canada, Africa, Latin America, the United States and Australia. Our Web site, http://www.birthmark.org/, receives more than 1 million hits each month, and we’ve networked over 20,000 infants and adults into treatment since 1995. I’ve co-authored a half dozen articles in medical journals and authored a chapter in a medical textbook. Today, I am considered the world’s lay expert on vascular tumors. The research that is sponsored by my foundation is on the verge of discovering the cause and soon, we hope, the cure of all vascular birthmarks and tumors.

For my efforts, in June of last year, I was presented a regional Jefferson Award in Washington, D.C., by Sen. Hillary Rodham Clinton. Jefferson Awards are considered the “Nobel Prize of public service.”

I am currently seeking my Ph.D. in Education so that I can develop the first online vascular birthmarks curriculum for primary care medical students. When I have completed the curriculum, as my dissertation, Albany Medical College will pilot it. I am very excited to be attending Walden, knowing that I will have the education and guidance I need to achieve this goal.

Linda Rozell-Shannon is the founder of the Vascular Birthmarks Foundation and a student in Walden’s Ph.D. in Education program with a Self-Designed specialization.

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