WARRIOR

I was born with a rare condition called Klippel-Trenaunay Syndrome. This condition, which affects approximately 1 in 100,000 individuals worldwide, is an overgrowth syndrome caused by a somatic gene mutation of the PIK3CA gene, and is 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 sclerotherapy treatments.

AMBASSADOR

In 2019, I joined the Vascular Birthmarks Foundation (VBF). Marked for a purpose, I wanted to make a difference in the lives of people like me, with vascular birthmarks. Today, I am honored to be the Head of the Teen Committee for the Vascular Birthmarks Foundation (VBF) Global Ambassadors.

Through my work with the VBF, I am now a co-host for the Annual Pennsylvania Purple Polka Dot Race. A branch of the Official Purple Polka Dot Race (PPDR) hosted annually in Michigan, the Pennsylvania PPDR donates 100% of its proceeds to the Vascular Birthmarks Foundation. For more information about the VBF or the Purple Polka Dot Race, check out the RESOURCES tab.

ADVOCATE

Growing up with my condition, I had to learn at a very young age to deal with frequent hospital visits, multiple surgeries, and symptoms of leg swelling, weakness, and discomfort. But, of all the medical procedures I had to endure, the most difficult thing that I had to deal with was the constant staring and questioning I would get about my birthmark.

From this personal experience, I recognized that a great need in our community is a message about not just accepting, but rather celebrating those things that make us different.

Everyone, not just the vascular birthmark community, has insecurities, but every difference that we possess has, in some way, impacted our lives and helped us grow into who we are today. This is the inspiration for ReMARKable you!

VOLUNTEER

I'm passionate about volunteering in my community to spread the mission of ReMARKable You! and provide education about vascular birthmarks, the Vascular Birthmarks Foundation, as well as Klippel-Trenaunay Syndrome and other rare disorders. I conduct small and large group presentations, book readings, and host educational displays. If you would like to schedule a visit to your school, church, library, wellness fair, or other community event, please reach out to me here.