Hi my name is Emma and I am 17 years old. I was born with a venous malformation of my left leg as well as KTS that spans from my toes all the way up to upper thigh and hip. However, my condition has become more complex over the years as I have developed a flexion contracture in my left knee which has left me wheelchair-bound for long distances, in addition to blood clotting issues that have led to me giving myself blood thinning shots twice a day.
Over the years I have had upwards of 30 sclerotherapy treatments with Dr. Rosen, a debulking surgery with Dr. Waner, and regular check-in appointments with Dr. Blei as well. Despite all the time my treatments take up, I don’t let that stop me from pursuing my passions and staying active. I am an avid athlete both in school where I am soon to be a captain of the varsity track team and out of school where I am apart of the New York Road Runners Youth Wheelchair Training Program.
Not only do I participate in NYRR programs, I am also a youth ambassador alumni and I have served as a Grand Marshal for the 2017 TCS NYC Marathon. Aside from wheelchair racing, I am also a mentor for a non-profit called Stay-Focused which certifies teens with disabilities in scuba diving. I am involved with various clubs and initiatives at my school, specifically ones related to mental health and advocacy.
Without my vascular malformation, I never would have been immersed in the amazing culture and family of the Vascular Birthmarks Foundation, or been provided with many of the opportunities I have had throughout my lifetime. I never would have attended the VBF Conference where I met several lifelong friends who I consider to be my “KT Sisters”, so for that, I am forever grateful. Thank you VBF for all you have done for me and all you continue to do for people living with vascular birthmarks, malformations, and anomalies.