It’s that time of year again- the VBF Vascular Birthmarks Month of Awareness is in May, and the Day of Awareness is on May 15th. Most of you know it already, but for those who are not familiar; our story (well a brief version) is below. Daniela is still undergoing embolization surgeries and laser procedures regularly. She also undergoes bone scans and bone age x-rays as well as yearly check-up with her orthopedist at Boston Children’s (no longer every 3 mths!), yearly visits to the vascular clinic in Boston, blood tests with the hematologist as well as bloodwork with every procedure. Despite all that, she never gives up and is not going to let her condition define her. Daniela will be 15 in June and we are so proud of all she does!
We are so happy that she has a great group of friends to support her as do our own family and friends! When Daniela is out for days and weeks from school, her friends bring her work, visit and even decorate her locker when she comes back. When she misses events because of her surgery, they skip those events and surprise her by coming to visit her. Through the VBF network, our family has also become friends with families who are in the same situation and are truly grateful to have them in our lives now as well.
Daniela is still playing softball, tennis and dancing. Things may not come as easy to her as they do for others, but she never gives up. She made honor roll every quarter while she was in middle school and was inducted into the National Junior Honor Society. She started high school this year and has managed to maintain her high average now too despite the extensive number days she missed for surgeries, appointments and the concussion she had this past winter. She still adores animals and loves taking care of her two dogs, Romeo & Juliet and helping with Maddie’s puppy, Lucy. She always said she wanted to be a vet and we can’t wait to see if that is the path life takes her down.
We are hoping to attend the VBF conference this Fall as it is back in NYC. Please visit www.birthmark.org for more information. We hope you will consider making a small donation to the VBF in honor of Daniela!
It was a normal pregnancy, 40 weeks no complications- our first child. The second she was born, the doctors took her aside to do their initial check-up and it was obvious something was wrong while all of the doctors hovered over her. It looked as if you could see right through her skin, you 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. She underwent an extraordinary amount of tests. We did not get to see her until late that night and still no answers were given to us. We left the hospital not knowing what was wrong with our baby and days and weeks went by and still no answers. We went to doctors and hospitals in Westchester, NYC, Boston, Philadelphia, etc. NYU finally diagnosed her as having a glomous venous malformation as well as capillary malformations. Of course, we had no idea what this was and a friend came across the VBF website while researching this condition online.
So, when she was about one year old, she started undergoing laser treatments to treat the affected areas. At around age two, Daniela began undergoing embolization treatments with Dr. 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 eventually need additional surgeries with her orthopedist. Yes, that is why we spoil her!
Daniela’s physician, Dr. Robert 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. 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. Daniela undergoes laser procedures with Dr. Gregory Levitin who is one of the most compassionate doctors we have met so far. He takes the time to talk to Daniela about how beautiful she is and how everyone is different. He tells her exactly what she can expect and spends time talking to us without ever rushing us out.
A couple of 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. We appreciate all Dr. Linda Rozell-Shannon does to support this foundation. To read more about how/why she started it, visit the website!
Daniela is an amazing, smart, loving, funny little girl! Daniela is beautiful – both inside and out!!
Chris, Joanmarie, Daniela & Madalena