Individuals on this list include parents or relatives of someone born with a vascular birthmark, as well as adults with vascular birthmarks who have agreed to make themselves available either by phone, in person, or by writing to discuss your mutual experiences in dealing with a vascular birthmark. None of these individuals are medical experts and they do not provide medical information. Instead, they can offer mutual support from a family perspective.
The Family Resource List is in alphabetic order by state. Family resources outside of the US are listed at the end in alphabetic order of country.
Our 4 year old daughter has an upper lip hemangioma.
She has had three surgeries this past year from Dr. Milton Waner. She is on
the road to recovery.
Fort Lauderdale, FL
Carrie’s daughter has facial hemangiomas and is being treated by Dr. Waner.
Clifton Park, NY 12065
(518) 371- 0661
Berkley, MI 48072
I was diagnosed with hemangiomas at about 6 weeks old. My mother felt a lump on the side if my neck and took me to my pediatrician who subsequently determined what they were. The hemangiomas subsequently grew significantly and split my skin, resulting in ulcerations on my neck and cheeks. At the time, there was no treatment for hemagiomas, per my parents. Later, it was discovered that steroids shrunk hemangiomas and I was started on a high dose of Prednisone during the summer of 1968, at which time I was about a year and a half old. By that time, I also had a tracheostomy because the hemangiomas were restricting my airway. The hemangiomas shrunk a lot at first but I had some remaining over the next few years. However, these also fully resolved eventually. I had extensive scarring on the right side of my face and the front of my neck, extending up under my chin. I had two reconstructive procedures on the scars when I was a teenager, which eliminated a portion of the scars. I did not pursue further surgery for the remaining scars until I was 35 although I had laser treatments to an area on my right cheek, where there had been hemangiomas and dilated blood vessels remained. Since then, I’ve had two skin flaps done, after tissue expanders had been used to create tissue.
Christi F. Morgan
High Point, NC 27262
Anna Kathryn Morgan
Our daughter developed what looked like a small mosquito bite in her left cheek at three weeks old. After a trip to the pediatrician and monthly visits to the Children’s Hospital, the doctors could not agree on a diagnosis. As Kate turned one, we decided to take matters into our own hands. After several sleepless nights researching the internet, we found the Vascular Birthmark Foundation website and emailed Kate’s story. Three days later our prayers were answered by Dr. Gregory Levitin. We later met and now at 18 mos. old are scheduled for surgery on Thursday, December 20th with Dr. Levitin and Dr. Milton Waner. High Point’s Mayor has declared December 20th, 2007 “Anna Kathryn Morgan Day”. All of our friends and family will be wearing the VBF bracelets in her honor on the day of her surgery! We hope to raise awareness and offer support to families in similar situations.
Sparta, NJ 07871
My daughter Clair had an AVM on her lower lip, doctors told us nothing could be done. Dr. Waner performed surgery, she looks like a different child….we are still in awe.
North East, Pa.
Cindy is founder of Hemangioma Hope. Her daughter Jennifer had a nasal tip hemangioma.
VBF Director of Family Services
My son was born in April 2004. A few days after we were home from the hospital we started seeing the segmental Hemangioma spread like wild fire across the right side of his face toward his eye. The Hemangioma is in the upper inner eye lid. The right side of his face is covered and some in his ear, and back of his neck. It took only two weeks for it to become dark red and start to thicken. He was on oral steroids from 6 weeks old to 4 1/2 months old. He started laser treatments at 4 months old and continues to have them every 8 weeks.
Jan and Andrew Dreger