Deanna Latino, United States (US), Illinois

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. See more about our story at https://youtu.be/CQOy3TWwfSQ

Ellahe Haghani, United States (US), New York

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.

Ilana Soto, United States (US), California

Miranda’ is a 15 year old beautiful girl that was born with malformations and red stains, she’s been bullyed in school or everywhere she goes but she’s very strong and loves school she will love to help to help other doctors to understand her condition and find a cure.

Isabelle Vargas, United States (US), Nevada

My name is Jayden Torres I’m 11 years old and I was born with SWS and my port wine stain at 6 months I was diagnosed with glaucoma I received an implant to control my pressure of my right eye and at 7 months my epileptic attacks started and then I got Hemangioma in my nose. Thanks to Dr. Linda I met my angel the Dr. Geronemus from Laser &Skin Surgery.

Jill Campbell, United States (US), Iowa

I am a mother of a beautiful 2 year old that has a PWS on the corner of her left eye that stretches 2 inches into her scalp. We found out at 1 month that she has glaucoma in that eye, which gives her the Diagnosis of Sturge Weber Syndrome Type 2. We feel lucky to have found out at birth about her PWS as I know many others wait and wait to know more about their diagnosis. She’s had 5 laser treatments and it has been a success. She is on Timolol twice a day for her glaucoma. She has also had 2 MRI’s currently no issues with the brain. I am more than willing to talk to anyone with questions. I love my daughter and would share our journey with anyone.

Jill Campbell, United States (US), Iowa

I am a mother of a beautiful 2.5 year old with a PWS on the corner of her left eye that goes approximately 2 inches into her scalp. We found out at 1 month that she has glaucoma in that eye, which gives her the Diagnosis of Sturge Weber Syndrome Type 2. We feel lucky to have found out at birth about her PWS as I know many others wait and wait to know more about their diagnosis. She has had 5 laser treatments and it has been a success. She also is on Timolol twice a day for her glaucoma. After 2 MRI’s, there is currently no issues with the brain. I am more than willing to talk to anyone with questions. I love my daughter and would share our journey with anyone.

Jodie Kauer Mader, United States (US), South Dakota

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

Josh Bruckner, United States (US), Montana

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.

Judy Hamm, United States (US), Alabama

I’m 54, widowed, and have one birth child and custody of two others. Recently, I completed an associates in applied science degree and have been accepted into nursing school for the fall. I was born with a PWS, glaucoma, and a tumor of Weber in the central nervous system of the brain. It only bothers me when it swells, and I have never suffered from seizures or loss of motors skills. My diagnosis came at age four, and I’ve consulted many doctors throughout my journey. Often times, I need to explain my conditions to doctors where I’m from, as they are often unfamiliar. Using Facebook, I am part of many blogs to try and help in any way possible. I realize that no two are the same, but we are all part of a big puzzle and need to stick together.

Justin Northern, United States (US), Oregon