It was a normal pregnancy, 40 weeks no complications- our first child. The second she was born, the doctors took her to do the initial check-up and it was obvious something was wrong. It looked like you could see right through her skin. We could see all of her veins, and her skin was red and purple. They told me they were not sure what was wrong, maybe her skin was too thin.
They let me hold her for a minute and then took her to the ICU. I did not get to see her until that night and still no answers. We left the hospital not knowing what was wrong with our baby and days, weeks went by, still no answers. We went to doctors in Westchester, NYC, Boston, Philadelphia, etc. They finally diagnosed her as having a glomous venous malformation as well as capillary malformations. So, when she was about one year old, she started undergoing laser treatments. At around age two, Daniela began undergoing embolization treatments with Dr. Robert Rosen. Daniela has been admitted to the hospital overnight for embolization procedures approximately every three months. She undergoes MRI’s annually, bone scanograms and bone age x-rays every six months, laser treatment, blood tests, etc. Daniela also has leg/foot length discrepancies and will visit her orthopedist at Boston Children’s Hospital soon–it’s getting harder to schedule all of this with her busy schedule! Yes, that is why we spoil her!
Daniela’s physician, Dr. Rosen, (Daniela’s favorite doctor) is an expert member of the VBF team. Through the VBF website, we also located Dr. Milton Waner who has treated Daniela in the past and we have also met with Dr. Geronemus who is also part of the VBF team. Daniela undergoes laser procedures with Dr. Gregory Levitin who is one of the most compassionate doctors we have met so far. The website includes family representatives, family stories, expert doctors, research studies and much more. We are grateful to the VBF for raising awareness and offering a source of information for families like us who do not have anywhere else to turn.
A few years ago, we attended the VBF Annual Conference in NYC. We attended presentations from doctors with updates on latest diagnosis and treatment options, sessions with psychologists, meetings with insurance experts and clinic visits. One of the most beneficial sessions our family participated in was the round table discussions with other families with similar situations. It was actually somewhat comforting for Daniela to go somewhere without having adults/kids stare, comment or tease her and for her to see for herself that she is not the only kid in the world that looks different. A portion of the donations received by the VBF goes toward sending families to these conferences where some of these older adults have never even gotten a proper diagnosis. The Annual Conference was such a great experience and we are so grateful to the VBF for their hard work and dedication in bringing all of these doctors and families together.
Daniela started middle school in 2015 and her favorite subject in school is still Science. She also still wants to be a veterinarian when she grows up. Daniela is still playing softball, doing hip-hop and playing tennis too. We are so happy that she has a great group of friends to support her as do our family and friends! We are also appreciative of all our new KT/VB friends who we have met over the past few years–no one understands the worry, frustration and experiences like you do.
Daniela is an amazing, smart, loving, funny little girl! Daniela is beautiful both inside and out!!