The Vascular Birthmark Foundation is holding its first charity auction at CharityBuzz.com from September 30 through October 14 in conjunction with its Mark of Beauty Gala on October 8, 2010, with all proceeds going towards research and treatment of children who are suffering from vascular deformities. Gala chair, Hyleri Katzenberg, shares her personal story of about the disfigurement her daughter Carleigh was born with and how she teamed up with VBF President Linda Rozell-Shannon to help others with these afflictions.
I am honored and privileged to be co-chairing The Vascular Birthmark Foundation's 2010 Mark of Beauty Gala with my husband Marc, on October 8th, 2010 in New York City. My work for this cause began in 1993, not long after my now 20-year-old daughter Carleigh, was operated on for a large disfiguring vascular deformity on her face. My beautiful baby girl was a normal, healthy 7 lbs, 10 oz at birth. When she was only two weeks old at her first visit to the pediatrician, I was made aware of the fact that what I thought was just a simple sucking blister on her lip, was actually a hemangioma that would continue to get larger and larger. That's where our nightmare began. As I watched this purplish growth grow and grow, my concern and worry for her future deepened. I took her to doctor after doctor and subjected my poor infant to numerous tortuous and invasive procedures, all to no avail. She was held down on several occasions while blindfolded for laser treatments, injected with steroids and given major systemic drugs, but nothing eradicated her disfigurement.
When I took her out in public, the points and whispers and stares from strangers often reduced me to tears. If adults could be so callous and uncensored, I feared for my daughter when she would be old enough to start school and be subjected to the unfiltered gawking of other children. My tenacious journey to get treatment for my daughter led me through a maze of confusion and misinformation, before I ultimately stumbled through utter frustration and sheer determination, upon the doctor in LA who incredibly removed Carleigh's hemangioma in outpatient surgery!
At fourteen months old, contrary to the opinions of the umpteen doctors who had seen Carleigh previously, she was now totally free of her deformity.
I felt so incredibly fortunate to have been able to spare my baby girl from the scrutiny she would have been subjected to otherwise. I decided that this had happened to us for a reason, and it was my responsibility to help other families and children struggling with vascular deformities. I founded a charitable foundation called The Belle Foundation (named for the heroine in "Beauty in The Beast") and worked tirelessly to raise awareness, educate the misinformed medical community and fight insurance providers who wanted to skirt coverage of treatment for vascular disfigurement under the ridiculous verbiage of "cosmetic procedures". Through my work with Belle, I met Linda Rozell-Shannon, whose daughter Christine was born with a hemangioma.
In 2008, after Rozell-Shannon had gone on to get her PHD in this field and had founded The Vascular Birthmark Foundation, our paths crossed again and Rozell-Shannon asked me to jump back on the bandwagon and take on this battle once more, since it had slipped so far backwards since I had last left things. Although I was just months out of surgery and treatment for kidney cancer, I enthusiastically accepted Rozell-Shannon's request and came aboard VBF as the Director of PR and Special Affairs.
The Vascular Birthmark Foundation, founded in 1994 has networked over 40,000 people into treatment. Today VBF is the leading not-for-profit in the world for children and adults affected by hemangiomas, port wine stains, Sturge-weber syndrome, Klippel Trenaunay and other vascular malformations and anomalies.
I am so proud of the work that Linda Rozell-Shannon has accomplished. She has continued a journey that I began so many years ago and through her persistence and perseverance, she is responsible for brightening the futures of so many people who otherwise would have had such an enormous cross in life, to bear. I congratulate Linda on her much deserved honor of winning this year's (awarded in NYC in September) MORE Magazine's reinvent yourself competition, since she is a truly remarkable and inspirational woman. I will proudly stand side by side with Rozell-Shannon on October 8th at The Hudson Theater, NYC as I chair the 2010 Mark of Beauty Gala.
For more information on VBF and the upcoming Gala for VBF and the medical conference in NYC on October 9th go to www.birthmark.org.