VBF Global Ambassadors are a global network of advocates who are working together with VBF to build awareness of vascular birthmarks and funnel support to every corner of the birthmarks community. In most cases, these are not medical professionals. However, many are either themselves an adult who has or had a vascular birthmark or who has a loved one with a vascular birthmark. In the directory below, you’ll learn more about their personal story.
If you or someone in your family has a birthmark and you’d like to speak with others who have had a similar experience, the Global Ambassadors can also help you identify a Parent or Adult Reps who has volunteered to provide personal support to other patients and families based on their own unique experiences.
To become a VBF Global Ambassador follow this link to register now or contact Scott Cupples, manager of the VBF Global Ambassador Program.
I am Scott Cupples, Lead Ambassador of the VBF Global Ambassador Team. I have lived my entire life with an untreated Port Wine Stain vascular birthmark up until starting treatments last year (thanks to VBF). Of course there have been times where my birthmark has made me feel insecure, but I’ve always had the mentality that it will never keep me from accomplishing what I want in life. In addition to my role at VBF, I work in corporate finance and serve in the Air National Guard as a First Sergeant. My goal with VBF is to help as many families as possible who are affected by vascular birthmarks, and to continuously spread awareness.
I surprised many when I came into this world born with a Port Wine Stain Birthmark. There was simply no knowledge of why, or how to treat. With the exception of experimental argon laser at a young age, my birthmark grew and thickened for many years until I was 36 years old when I had the first surgery to debulk my birthmark. The Vascular Birthmarks Foundation does an incredible job bringing much needed awareness to the world!
My son Jade-Luccas was born with a facial birthmark (Port Wine Stain). We visited a few dermatologists in the Mea and they all agreed it will lighten by the time he turns 7. Luccas started seeing himself in the mirror, and would try to wipe off his birthmark and ask why it was still there. In school, he was bullied. We started to research doctors around the world, and found the Vascular Birthmarks Foundation and Dr. Linda helped us! We decided to write a book and shed light on raising awareness regarding birthmarks, and increasing social awareness in the Middle East towards accepting others and tolerance.
I am a mother of a beautiful boy Zachary who is currently 3 years old and is just starting his laser treatment journey on his PWS at the John Radcliffe Hospital Oxford . We live in Wiltshire in the United Kingdom. My hope is to bring a connection to others in the UK to VBF and to bring more awareness. Currently I run a PWS support group here in the UK through Facebook which has reached out to over 400 members and is continuing to grow. Members are parents, adults with PWS and anyone else affected by PWS.
In 2016, my first-born child, Florence, was born with a facial V2 port wine stain. Like others, my wife and I were left bewildered as to what steps to take next. We sought out the VBF who provided us with guidance on treatment and opened a global support community to us. We have since completed 12 treatments. Grateful for the support we were given, I set about organizing a fundraising and awareness campaign for the VBF in which I completed Norway’s toughest mountain race, raising $4,000.
Our daughter Patricia suffered from severe Laryngomalacia and Subglottic Hemangioma which blocked her airway. We thought everything was ok, as it was not until 2 weeks after being born that she had difficulty breathing, and had to undergo Tracheostomy. We could not find any hemangioma experts in my country, and almost lost hope until my wife came across the Vascular Birthmarks Foundation. Dr. Linda Rozell-Shannon and Dr. Gregory Levitin helped us get more information about Patricia’s condition and proper treatment. Now she is almost three years old, energetic and healthy – which wouldn’t be possible without the Vascular Birthmarks Foundation.
Jeff Bergen is a former Navy Corpsman who completed 8 years of active service and was honorably discharged. After the Navy he went to nursing school and later went on to attain a Master’s Degree in Nursing. As a Registered Nurse, he has worked in infectious disease and oncology nursing, and was a hospital epidemiology nurse. He is certified in infection control and health care quality. He is currently the manager of the Office of Licensure, Accreditation & Regulation at Cedars-Sinai Medical Center in Los Angeles, CA. He is also pursuing his PhD in Nursing through The Catholic University of America. Jeff is an established patient at the Beckman Laser Institute where receives treatment for his portwine stain.
12 year old Josh was born in southern China, where his extensive PWS was only recognized as a “large red birthmark”. His affected eye was often swollen shut, and his swollen arm, hand and jaw lost most of their ability to feel pain.
Josh came to Montana to his new family at age 5. He has always been “close but not quite” to diagnoses of SWS, KTS, CLOVES, etc. His parents have learned to focus on symptoms versus diagnosis. He has some crazy rare vascular bone overgrowth that may yet hugely impact his life.
Josh has a huge heart for helping “kids like me”, and wants to train a therapy dog for them. While initially shy with new adults, Josh would love to be an ambassador to other children. His Mom is available to talk to the parents.
Our daughter Savannah is 2 years old and she was born with Port Wine Stains on roughly 80% of her body. At first it was very overwhelming because we didn’t know anything about these types of birthmarks or the other issues that they can cause. Through research online, our specialists and other parents we have been able to gain a better understanding of what Port Wine Stains are and what other things can be associated with them. We are still learning, but are hopeful that we can spread awareness and are here to support other parents.
My name is Eric, I was born with a PWS. Growing up I faced bullies, depression, fear, and insecurities – but that all changed with time. Once I accepted who I was the rest was history. I used those hard times to become who I am today. Today I use music to help spread my message of strength, love and confidence. I am dedicated to my community by providing school supplies to the youth and winter wear to the homeless. My hand is always out to anyone who needs it! I run a social media page “Port Wine & Proud” supports you!
Hey! I’m a 35 year old Police Sergeant, husband, and father to two wonderful children. I’ve had a port wine stain on the left side of my face/neck/lip my whole life. Growing up, I went through the all of the normal awkwardness of being a kid, with the added pressures of looking different. Although I didn’t realize it then, the adversities I faced made me a stronger person. Today, I get to enjoy my life and family as a guy who can face just about anything. However, my confidence didn’t come easy, and I wish I had someone in a similar circumstance to lean on as a kid. For this reason, I’m happy to be an ambassador, to share experiences and help young kids with birthmarks in any way I can!
My daughter London and I have joined the Ambassador program together and here is her story! My name is London and I am 9 years old. I was born with a hemangioma directly underneath and to the corner of my right eye. The placement and the speed in which it was growing, encouraged my Dr and parents to start propranolol and later laser treatments. After 7 laser surgeries the hemangioma is gone. A scar remains and it does not bother me. It reminds me of my amazing story every day. I love it. My Mom, Casey, also was born with a strawberry hemangioma on the top of her head. It is gone now and they did not have to do any surgeries to have it removed. I spread awareness at my school with the Buddy Booby Book, wear your mark/heart day, as well as sharing my stories with everybody I can. I’d love to become an ambassador and help other kids like me get through a difficult time with their hemangioma or other birthmark.
My daughter, Reagan, was diagnosed with a large, compound, segmental hemangioma of the scalp with a portion abutting the spinal dura at 1 month old. After being thoroughly tested for and cleared of PHACES Syndrome, she has taken Propranolol for 13 months. We experienced several ulcerations, full sedation for MRI/MRA, a cardiac consult and testing, a neurosurgeon consult, and over a dozen dermatology consults. Her hemangioma is now in involution, and we are beginning to wean from Propranolol and look forward to the next stage of our journey – helping others advocate for their children and care for all children with vascular birthmarks.
I’ve had a large birthmark on my left leg since I was born in ’93, but I wasn’t diagnosed with KT Syndrome until 2012, when my pain started. Since then I discovered the VBF, which has been instrumental in getting me help with experts on my condition. As a global ambassador, I hope to get that same help to others in the Vascular Birthmark community that may not be aware of the VBF, and would greatly benefit from their resources, as I and many others have.
I have lived my entire life with an untreated port wine stain vascular birthmark that covers most of my left arm and shoulder. When I was younger, I struggled with the insecurity that comes with being “different” than most. However, I have come to embrace who I am and I am looking forward to helping others who can relate to my situation. I am an active duty officer in the US Navy, currently stationed in Omaha, Nebraska.
Mother of a beautiful girl with a PWS on her left side of the face. At the beginning of our journey nobody knew what was on her face, we went to so many medical examinations with no luck. Thanks to VBF and support groups on Facebook, we found Dr. Linda and learned everything about our birthmark, and now we are seeing Dr. Geronemus in New York and finally we are satisfied that we are doing the best for our child. As a parent who did not know that PWS exist, we are very grateful and it is very important for us to share awareness.
Martin was born with faint, pink marks that we were told were due to birth and would fade. They didn’t fade; they got brighter and darker and became raised, it covered his back, half of his chest, full arm and side of his head. He was misdiagnosed and when his skin started to open with sores we took him to the ER where many tests were done and in a couple of days was diagnosed with PHACE Syndrome. He was two months old, we were terrified, something we were told would not be any harm was actually internally affecting him and was potentially life threatening as they were unsure he was getting enough blood supply with the narrowing of his arteries. He started taking propranolol to fade the hemangioma and we became experts at bandaging our months old baby so his sores would close and not become infected. His few physical delays didn’t stop him as he is now a four-nado who loves to run, play and sing. He is no longer on propranolol but is on a daily aspirin as a blood thinner for his narrowed arteries and he is still at risk of stroke. He will continue to have many annual tests done and our journey continues as he starts school this year. We are truly blessed to have him and we adore his beautiful PHACE and soul. <3
I was born with a port wine stain that covered most the left side of my face. My mother took me to doctor after doctor, but there was no viable treatment. So I grew up with a big purple mark on my face, and it was not easy. As I got older we tried using makeup, but Covermark was the only thing we could find, and it was thick and plastic, and took a long time to apply. By the time I got to college I had discovered a theatrical makeup, Panstick, with which I could create a mask to hide behind. For the first time, people who met me, saw a normal, if heavily made up face. I was nearly 40 years old when the first lasers were approved for experimentation. The ruby laser faded the birthmark, but it left scars. Today I am a grandmother, and after more than 35 treatments, my birthmark is light enough to be covered with ordinary treatments. Many days, I feel comfortable enough to wear no makeup at all. I published e a memoir of living with a birthmark, Marked for Life, which is available on Amazon.
I live in Umbria, Italy, and would be happy to share what I have learned with others. Sono in grado di aiutarvi anche in Italiano.
My name is Alana Dolcemascolo. I have a venous vascular malformation on my right arm. I had 17 sclerotherapy treatments with Dr. Robert Rosen in NYC. Also I volunteered at 2 of the VBF conferences in NYC. At the age of 6 I had my first surgery at Lenox Hill Hospital.
A small red mark appeared on my daughter’s forehead at approximately 2 weeks of age. It got bigger, more red, and bumpy in texture within a few weeks, which was terrifying as new parents. People would stare, comment, and look concerned as we passed them. We did our own research and saw our pediatrician who confirmed it was a hemangioma. With being hesitant about medications, we chose not to medicate at that time and continue to track it with the pediatrician and dermatologist. Her hemangioma stopped growing when she was about 12 months old, and has since been fading. At 18 months we decided to try topical Timolol medication, and at 22 months decided to start oral Propranolol as well; both to see if the process could be expedited. We love Nora no matter what and we are so glad to be an advocate for her and others that make birthmarks beautiful!!
My daughter Madeleine was born with a little pink patch on her left upper arm. I did a lot of my own research and found it to be a mixed hemangioma. It started to grow, the red got brighter and more raised, her arm had a bulge and was blue all the way round as if she had been bruised. We finally got a referral from our GP and at 6 months given an appointment to great Ormond street in London. We went for our appointment and started on Propranolol. Madeleine has also always had a patchy right arm. And at the age of 11 months after seeing Dr. Glover now have a diagnosis of a capillary malformation. Along with this she also has a stork bite on the back of her neck and a blood disorder (which isn’t linked to any of her birthmarks). I have spent hours and hours researching vascular birthmarks and feel that in the UK there isn’t enough information available. I want to be able to help spread awareness! I wish I had found someone earlier in our birthmark journey. I feel that people with birthmarks are not always accepted as well as someone without a birthmark, but I do feel this is because many people do not know anything about them. I didn’t, until my daughter was born with one. I want to use my spare time to raise awareness and acceptance for people with all types of vascular birthmarks, and to let people know about VBF and the hard work and support they give to not only the US but also the UK and every other country where people are seeking advice and help. Birthmarks are beautiful! They are not imperfections they are perfections.
I have a large birthmark that makes me stand out and I love that about myself. Growing up I dealt with bullying, insecurity, anger, and depression. I still deal with anxiety when I am in public but the more I accept and learn to love myself, the more it disappears. I did laser treatments when I was younger but realized I was trying to get rid of it to make others feel more comfortable. It has taken time, but I love who I am, and I love my life. I am an active presence on social media to spread awareness of birthmarks and break the stereotypes of beauty. I also work as an accountant, and I am also a former opera singer. I am pursuing my CPA and always pushing myself past my comfort zone. I have PWS but PWS doesn’t own me.
My daughter (Chloe) was born with various venous malformations including a large PWS across her chest and right arm. We’ve done the best we can with our doctors at Primary Children’s Hospital, and Chloe is doing well despite her challenges. After numerous rounds of sclerotherapy, she’s left with microcystic hygromas and other various venous malformations. I’m thrilled to find this foundation and hope to connect with others!
When Lydia was born in 2013, doctors thought the redness on left side of her face was bruising caused because her twin brother had been on top of her during the birthing process. Six weeks later, a pediatric dermatologist officially diagnosed the mark as a port wine stain and her mother Kelly began scouring the internet for information and support. Lydia started treatments at 3 months old and began being monitored for Sturge Weber Syndrome. After discovering the VBF, Kelly created a network of Colorado port wine stain families that meet for play dates and share info. Lydia & Kelly believe awareness of vascular birthmarks leads to greater acceptance and they used an opportunity when a story about Lydia’s first day at preschool after a treatment went viral to connect with others all over the world. They look forward to raising even more awareness through the Ambassador program.
Kathryn Brocchi, New York, United States
Hi, my name is Kathryn. I have been diagnosed with Cloves Syndrome and I have light port wine stains all over my left arm and right hand. I also have a port wine stain on my lower back. I joined the Ambassadors to help VBF spread awareness!
Jaxon was born February 26th and just a week after he was born he was coming home looking back on the pictures there was a small red line in between his eyes. By the 20th of that month the line was bigger and swollen, so I made an appointment with his pediatrician and explained that he had seen this before and it was a compound hemangioma. He had not dealt with many, but he knew of a world-renowned doctor in the Charleston area that specialized in them. So, we immediately got a referral and met with Dr. Hochman, who told us that he would need a medicine and, would be admitted to the hospital to start it. We are here to be a voice for our son and others alike.
I am 43 years old and was born with a PWS. I had my first seizure at 16 months old. My parents were told by our pediatrician to treat me as normal as possible so, that is how I was treated. I did have some assistance in math and reading in grammar school. I graduated from HS in 1993 and have a BA in Elementary English Education and a minor in Religious Studies. I have been working in the disability field for a state agency for almost 17 years. Feel free to ask questions!
I have a PWS on both sides of my face, my neck, my right arm and right chest. There have been times I’ve hated my PWS and I’ve been very depressed over having it; usually when I get the inevitable, “what’s wrong with your face?” comment. I wore make up to cover it as a teen. Now I just don’t care, I am who I am, and I live by the phrase, “the people who matter don’t mind and the people who mind don’t matter.” I started treatments at 6 years old with just topical numbing cream. I had to stop for a while because my PWS is large and treatment was too painful. When I was 9 years old, we found a doctor who treated children under general anesthesia, it made treatment so much easier. I now work as a dermatology nurse and get be a part of other people’s treatment journeys, which I absolutely love!
I am Zainab From Egypt. I was born with a Port Wine Stain birthmark on my face, and with a swollen lower lip. People always thought that maybe my mark was due to an accident or burning, and always asked me why my lip was so big. After telling them that it is a gift from God and he create me like that and I love his creation of me, they changed their minds and concentrated on my personality. My birthmark doesn’t prevent me from doing whatever I want to do, and it makes me a lovely person. Thank you to VBF, for helping me understand my birthmark, I’m really happy to spread the awareness as an Ambassador. VBF gives hope to me to treat my birthmark, without fearing of side effect distortions.
My granddaughter (who calls me Mom) was diagnosed with KTS at birth. This was changed to CMTC (Cutis Marmorata Telangiectatica Congenita) at 18 months. She later had Proteus added to the list of her conditions and was diagnosed most recently at the age of 11 with CLOVES. When she was born I returned to school to earn my nursing degree and am currently her private-duty nurse. As a registered nurse, I’ve had the opportunity to assist parents/patients with the understanding and interpretation of medical terminology regarding their individual case. As the president of the Global CMTC-OVM US Organization, I have shared in the connection of bringing patients and their families together with experienced physicians in their search for answers. We believe, “We’re all a little rare; but, when we fall into mutual rareness…We Call It A Family!
My name is Lenka, I was born in Czech Republic in 1984 with PWS on my right side of my face. Growing up I faced bullies, but I became confident women and I would like to inspire others. I am ready to run a Czech Facebook page for adults as we only have only pages for children and parents. I would like to bring more awareness here in Czech Republic and I am ready to help people with the similar problems in any way all over the world.
I was born with a port wine stain covering the right half side of my face. My family tried to find any treatment they could for me, but we were unsuccessful, and the lesion was getting worse and worse every day. At age 28 my face became horribly disfigured and was still left untreated, until I miraculously found Doctor Milton Waner who saved my face and changed my whole life.
Hi! I was born with a Port Wine Stain birthmark covering 45% of my right leg from hip to toe. Luckily, my mother worked at a hospital and knew many doctors, so I was treated with amazing care since birth. I’ve had countless surgeries and treatments to help with pain, swelling, and appearance. Since being aware of VBF, I have begun educating myself about my legs and people who live with similar experiences. Raising awareness and acceptance is something I can’t wait to become a part of!
My name is Rachel Hudson and my 6 year old daughter Hadlee was born with a Port Wine Stain on her left eye and forehead. Hadlee had her 5th laser treatment at the 2018 VBF conference in NYC and has had amazing results. We were misinformed about birthmarks when she was born and found VBF through research. When Hadlee was born, we were told her Birthmark would disappear and not to worry. The VBF informed us bout treatments and the chance of developing SEO. Hadlee received ultrasounds and sees an ophthalmologist regularly to be sure she is in good health. The VBF is such a huge part in Hadlee’s health and confidence. Hadlee already knows enough to explain what a PWS is and why she needs treatments. She loves animals, reading, school, and making new friends. We are so grateful for the VBF and everything they do for us.
Hi my name is Razle, I have PWS covering almost all of the left side of my body. Ever since I found a group that deals with birthmarks, I have become more eager to learn about it and much more interested into how many others who have birthmarks handle theirs, as well as what treatment their doctors use. I have never been treated once my entire life. However, I learn to appreciate mine, and am considering not to undergo any kind of treatment at all. Nevertheless, I used my situation to teach kids to become more respectful, as I am a teacher. I know what it is like to be stared at with critical eyes, and I just want to help make a difference.
My name is Andrew Jenkins, and I have a port wine stain (Capillary Malformation), on my right cheek. It was looked at regularly until I was nine-years-old, I saw a plastic surgeon at Gloucester Royal Hospital, named Mr. Clive Reid. He intended to do a skin graft on my birthmark but decided against it because of the location, and we decided to put my name forward for laser treatment. In November 1992, I received a letter from a Mr. J M Kenealy from Frenchay Hospital in Bristol, offering me some laser treatment and offering a summary of how it works. I had a test patch done on my left arm and had no adverse reactions, so we decided to go ahead with the treatment.
My earliest memories of realizing I had a birthmark stem from growing up in the late 60’s to 70’s on a ranch in the middle of the prairie of South Dakota. I recollect flying to variuos places with my parents and my sister in our small plane to visit various doctors who might be able to help me. I was sent away from a Stanford University doctor with an orange oil to rub on my mark that was going make it lighten and a container of a Linda O’Leary makeup. Told by that doctor, “In twenty years they will have a laser that will be able to treat it.” Low and behold 20 years later I received my first laser surgery on the left side of my face, I have had 76 treatments, 1 Sinus and nose reconstruction with bone grafting and have also lived with glaucoma since I was 14 and had a trabectome that has lasted to this day – I’m almost 50. I’m here to help with answering questions, giving talks and educating those that need assistance. You have a friend in me! – Jodie
I am Batool Kaushal from India. I have lived 54 years of life handling bleeding and pain due to Arteriovenous Malformation of my Pelvis, right leg and foot. I had four surgeries before attaining the age of four. Doctors presumed it to be rectal piles and the bleeding did not stop, till I was operated for pelvic hemangiomas at the age of 18. Eight hour long surgery stopped my profuse bleeding but my leg and foot AVM continued to give me severe pain, till I found Vascular Birthmark Foundation online and approached Dr. Linda, who arranged my leg surgery at Lenox hill hospital in NYC, in 2014. I continue to get advice from AVM team of VBF. I wish to support and help children and adults with Birthmarks in India and around the globe, so that patients like me do not suffer due to lack of awareness and medical aid anywhere in India and abroad.
I am Rafaela, 36 years old, and was born with port wine stain. I’ve never been treated before because, and I am proud of my birthmark. Even though I was bullied as a child, I never had low self-esteem. I have a wonderful family which always support me. Now I am yoga instructor and they call me “the beautifully marked yoga instructor”. I am here to provide support and awareness to others who have the same beautiful mark, especially in Singapore and southeast Asia. Thank you VBF, I’m proud be a Global Ambassador!
My Daughter was correctly diagnosed with a VM at the age of 10. It is intramuscular as well in fatty tissue. She has had sclerotherapy twice so far. The blood clots that she has from her VM are very painful especially from puberty and extraneous exercise. Her VM is located on her gluteus and is almost covering the whole right side of her buttocks. It’s very lumpy and hot to the touch all the time. She has a hard time dealing with the stares that other people give her, even though it is covered in clothing. It’s hard as a mother to see my child worry about what people say and the stares, it’s even harder to know that she is constantly in pain and I can’t do anything to help ( she hates taking pain killers, so she just deals with the pain).
When my son Jeremy was born the doctors immediately noticed that he had a slight drooping on the left side of his face. As a result, he was misdiagnosed and it was only after several different visits to doctors that we found that he had a venous malformation. He’s had several treatments and is now 14 years old and going into high school and thriving.
My name is Gabrielle, or “Gabby”. I have an untreated port wine stain covering my right arm and hand. I’m also a sucker for humor, so my favorite thing about my PWS has to be the irony of it. I’ll go days at a time without even thinking about my birthmark. I’ll notice it on my hand when I reach for something, and it’s completely casual. When I describe myself, my birthmark doesn’t come to mind. But there isn’t a day that goes by where others don’t notice it. When others describe me, it’s probably the first thing that comes to mind. I mean, they don’t call me “the girl with the thing on her arm” because I have a great smile.
How funny is that? What makes me stand out to others doesn’t stand out to me, and that is why VBF is important to me. I want to raise awareness and help support other children and teens living with a vascular birthmark, because I hope that one day my birthmark isn’t ironic. Of course, then I’ll have to find a new favorite thing about my port wine stain.
Our daughter was born with Port Wine Stains covering half of her face and back. With little knowledge of what Port Wine Stains were, we never expected a birthmark would present with so many health concerns. She was also diagnosed with Sturge-Weber Type II. My goal is to educate those around Rockford, Illinois area, as well as to provide support to parents and families also experiencing similar situation.
Evelyn Grace, our 19-month-old daughter was born at 34 weeks due to preeclampsia. She came into this world with a fight and a 17 day stay in the NICU at Overland Park Regional in Overland Park, KS. Evelyn’s doctor was sure it was just brushing from her traumatic birth. A few days later, her father and I were told the news that it was a Port Wine Stain birthmark. We were shocked, as we had never heard of a such thing before that moment. Evelyn was soon tested for Sturge-Weber Syndrome and possibly blindness in her left eye and waiting on the results seemed like forever. Thankfully enough, Evelyn was cleared of any further complications. Days went by, we left the NICU and was referred to a Dermatologist to talk about laser option, this was intimidating. Her Dermatologist recommended 4-6 treatments for her PWS to fade over the next few years. Here we are 5 treatments in and still have little to no fading on Evelyn’s cheek. We get looks, questions and comments while in public, which eat away at me considering Evelyn has no idea what is being said and just can’t help but smile back. We have learned to ignore the comments and just remember how special she truly is. We will continue our journey with treatments.
I am born in New Delhi, India. For few years I was not even aware that the red spot on my face was a birthmark, and neither were my parents. The doctor told my parents that It will vanish over time but it did not. In India, it is not very common to have a vascular birthmark so I have spent whole my life explaining people that was not the result of an accident, but something I am born with. There are no treatments available here for these birthmarks, so most of us are just living with it. I found one clinic in Delhi which has pulse dye laser and it’s been a year since I’ve started treatment. I have realized after starting the treatment that we should accept ourselves and I want to embrace my mark. It took me a lot of effort to find my inner peace!
I’m Lucy, I’m 15, and I have a port wine stain, Klippel-Trenaunay Syndrome and hemihyperplasia. One side of my body grows faster than the other, I have weak muscles, bones and immune system and I’ve had over 40 surgeries since I was 10 months old. I’m a dancer and don’t let my conditions stop me from doing anything.
Hello! My name is Shelby & I am the mother of Fallon! Fallon was born with an infantile hemangioma – which is why she has the nickname “Strawberry Shortcake!”. No one in our family has ever had a hemangioma (that we know of!) and we were unsure of what is was and how to care for it. After speaking with her specialist at a children’s hospital we found out some amazing facts about hemangiomas! Now, we spread awareness around our community and have made new friends that have or have children with hemangiomas! We carry pamphlets of information & hand them out to those who stare or ask questions! We love teaching about them!
Hello, my name Yajaira Morales, my nickname is Yaya, and I was born with a birthmark that covers my whole left side of my body. It was very difficult in school with a lot of bullying. Growing up was very hard for me, but over the years I learned to love myself and who I am. Now I am happily married, have two wonderful daughters, and a career as a veterinary technician. My new passion now is to help others like me to tell them it going to be ok, and that we are beautiful and much more than our birthmarks.
Kelsey Mueller was born with a very large hemangioma which covered her left arm completely from fingertips to chest, neck and shoulder. At the age of two she underwent her first skin graph to close some of the ulcerated areas and release some of the contractures of her elbow and armpit hoping get full range of motion in her arm. The doctors had taken skin from her lower back to use for the skin grafts. Throughout her child hood she went through multiple skin graphs and other surgeries just about every 2-3 years until now to help straighten her arm that has become restricted by scar tissue and the contractures from the past. Many people think that she was burned because of the skin grafts; some even argue that she is lying to them when she says it is her birthmark even to this day. She has found herself having over 30 surgeries and she will need more surgeries in the future and still does not have much range of motion in her arm, but uses these struggles as a platform to raise awareness to vascular birthmarks and the effects they have on people both mentally and physically and continues to cherishes every moment she gets to spend with her daughter and gets to be blessed with the life she has now and raises awareness as much as she can.
I was born in Venezuela, I was diagnosed with a hemangioma and was told we should wait until I turned 7 years old because it was supposed to disappear. However, that never happened. So I began treatment very late, and due to inexperienced doctors I almost lost my life when I was 7 years old. After this experience, doctors recommended that my parents to take me out of the country and see vascular anomalies specialists, so we came to Boston. It has been a long process with lots of procedures, but God has been great, and this experience has made me strong. Otherwise, I am a grateful women, I’m a violinist, I speak Spanish, English, Portugués, as well as sign language. I went to Med School for 4 years in my country, I didn’t finish because I move to the US, but at some point I would love to continue studying.
Alyssa is a 14 years old from Concord, NC and is not your typical teen. She is a competitive hip hop dancer & middle school cheerleader. She entertains audiences with stand up comedy routines, and impressions of female comedians like Miranda Sings. She is a runway model and loves fashion shows. She has a PWS vascular birthmark on her left arm from fingertips to shoulder, and in several other places on her body. Not only has she been bullied at school because of her birthmarks, she’s been embarrassed by suggestive questions from adults and peers about what her birthmarks could be. To date, photographers have been the most accepting of Alyssa’s image. It’s rewarding when I read the social media messages from other girls her age who are inspired by her tenacity to pursue modeling and acting and the reposts from women who wish they had the courage to put themselves out there like Alyssa has. Alyssa brands herself as a Vascular Birthmark Ambassador, encouraging young girls who also have one to feel empowered to pursue their dreams and show off their birthmark.
A little about my daughter Alice – she is the youngest ‘twincess’. They were born at 37 weeks, she weighed 5 pounds 4 ounces, and her hemangioma came up as a little scratch at two weeks old. Alice was diagnosed with a Hemangioma on her right eye lid when she was 3 weeks old. She falls in the 10% of having to see medical specialists. We are planning a Car Show charity event in honor of Alice for VBF.
I was diagnosed with blue rubber bleb nevus syndrome at 18 months old. Since, I have a right parieto-occipital AVM that bled before I was born. I also have 3 venous malformations on my left leg and toes. 2 paraspinal muscle lesions and a lesion on my right retina.
My baby was born with a hemangioma in her mouth and nose. When she was a week old she started ulceration. At that moment, we started to look for help. Sadly, we couldn’t find a doctor in our country who could treat her. She took propranolol, atenolol, timolol and she received laser. Nothing worked early on, so we started to look for options on the internet which is where we found Dr Linda. She told us to contact baby face foundation. After a year of waiting, they took us to New York and Dr. Waner and Dr. Warren made the reconstructive surgery for my baby. We found angels in this journey that have changed my baby’s life and we can’t be more thankful for this opportunity to spread awareness!
My name is Morgan Putbrese, I am 22 years old and I have klippel-trenaunay syndrome which affects my left leg from buttock to knee with a vascular malformation. I also have lymphatic involving muscles, bone, and nerve. Although I face daily complications with this I still serve my community as a first responder, and I compete as an adaptive athlete in CrossFit. When my condition progressed, I came across VBF and got in touch with doctors and fellow people with my condition. Seeing the Global Ambassador stories inspired me to develop the approach I have with my condition and that is why I believe strongly I was born with this condition, so I can bring awareness and show the world “If I can, you can too.”
My son Michael has a Port Wine Stain birthmark. He has received many laser treatments since he was 3 months old. I would like to help spread as much awareness about it as I can, which will eventually lead to more acceptance. When I speak about my son and his birthmark it is somewhat like therapy for me. It has been very emotional. I want to help anyone going through the same feelings as I am. I made a personalized book all about Michael and read it to his classmates before a laser surgery. It has been so helpful. Please contact me and I would love to share it with you!
I was born with a lymphatic malformation/hemangioma on my left hip. I had two pretty invasive surgeries as a baby and three more between the ages of 10 and 25. Thankfully, I never really have had many complications over the years. I’m now in my 40’s, have had two children and am an avid runner. I’ve completed over 20 half marathons and a full marathon all with a lymphatic malformation/hemangioma the covers my entire left hip.
Hello VBF! My name is Patrick Rose. I am 26 years old with a port-wine stain birthmark and SWS. My port wine stain has required 27 laser surgeries, the last one being when I was 12 years old. I was also born with glaucoma and SWS leaving me legally blind in both eyes. I joined this group through recommendation from a friend of mine who some of you may know, Scott Cupples. As a child I was bullied and very self-conscious of my birthmark. At the age of 15 I discovered a passion for fitness and haven’t looked back since. Fitness is what helped me gain the self-confidence to embrace my birthmark. To stand out, to look different from others is a gift. It makes us unique. There are still times where I get self-conscious but I’ve grown to realize, that WE are our own worst critics. Everyone has things that they don’t like about themselves. I am also a bodybuilder, personal trainer and fitness enthusiast in my free time. I encourage all of you to find your passion and embrace it!
I’m Sarah, 31, and live in New York with my three children and husband. I have a PWS covering over 50% of my body. When I was younger I was severely bullied because of my birthmark. While not an easy experience, I used the fuel to ignite my personal journey in speaking out against bullying, as well as being an advocate to others in need. While I did have several laser treatments at a young age when in 8th grade I decided against further treatment and came to fully accept and love myself both inside and out. While I’m currently a stay at home mom with my young children, I dream of doing advocacy work, spreading a message of self-love and body positivity and one day writing a children’s book to address these issues. The first step in my journey is connecting and being a resource for others on a similar journey. I want to give parents and children hope that you can come out of this medical journey with confidence, a strong spirit and appreciation for life.
Edie Yvonne, California, United States
Edie was born with a port wine stain on her lower extremity. In 2008, it was challenging to receive a proper diagnosis and she was consistently misdiagnosed until we found a team of doctors through the Vascular Birthmark Foundation. We are so grateful to be a part of the community at VBF and finally have an international team of experts to treat and monitor her condition. Edie wrote a book titled My Beautiful Birthmark to raise funds for VBF for families to get proper diagnosis for their children. She is also the star of a new short film where her birthmark is exposed and not covered for the first time.