My name is Maille, and I am an average high school student who loves my friends, my family, coffee, dance, all things Disney, and of course my dog, Clover.
What is a little different about me, though, is that I was born with a rare condition called KlippelTrenaunay Syndrome or KTS. This condition, which affects only 1 in every 100,000 individuals worldwide is caused by a somatic gene mutation of the PIK3CA gene, and considered one of the 7,000 recognized rare diseases by the National Organization for Rare Disorders or NORD.
As a result of my condition, I have a large birthmark, called a port wine stain, that covers the right side of my body, from my lower back to my pinky toe. I also have a leg size discrepancy, meaning my right leg and foot are larger than my left, swelling, pain and abnormal blood vessels that often require treatment and removal with sclerotherapy.
Growing up with KTS, I have become used to people staring at my birthmark or asking me questions about what happened to me. I am really good at explaining that “No, I was not in an accident,” or “No, I didn’t get burned.” I have also discovered that sometimes I can’t always do the things I want to do without my leg getting swollen, or experiencing pain or seizures in my leg.
Working closely with my team of physicians at the Children’s Hospital of Philadelphia’s Comprehensive Vascular Anomalies Program, I have undergone several surgical procedures, and am now able to do many of the things I enjoy, especially dance. I am also very hopeful to participate in clinical trials for medications specifically targeted to slow down the progression of my Klippel-Trenaunay Syndrome.
Despite my condition, I grew up determined that I did not want a life limited by my physical obstacles or hiding because of my physical appearance.
In 2019, I joined the Vascular Birthmarks Foundation as a Global Ambassador. I decided that I was marked for a purpose, to create a difference in the lives people with birthmarks and make others realize that just because someone looks different doesn’t mean that they are less capable.
While I was one of the youngest ambassadors, it did not stop my determination to spread awareness and promote the conversation about birthmarks and related syndromes. I created a social impact initiative called Maille’s Mission, where I could share about myself and promote a positive image and education about birthmarked individuals.
I also launched an interview series on YouTube called More Than A Birthmark, where I promoted the amazing and unique talents of the birthmark community.
Today, I am a competitive dancer, advocate for individuals with vascular birthmarks and passionate community service volunteer. I want to shine a light on individuals with vascular birthmarks and show how truly “reMARKable” they are.
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