Since Kylee was born in 2005, she has been a strong–willed, independent, and athletic girl. Kylee has two sisters and no brothers, but surely she is the “boy” of the bunch. Between ages 1‑2, she broke her arm three times while climbing, jumping, etc. Kylee has also always had a sense of style – clothes and hats and shoes – she loves to dress up and pose for the camera, just like most 6-year-old girls. But she has a truly unique style as well; she does not need to match, she does not need pink. So she truly is one of a kind, a girly stylish “tomboy” that has developed an even more unique condition called Vitiligo.
Kylee was 3 years old when we moved to the Chicago area and that summer we spent much of our time in the swimming pool. It was this summer we began to notice white spots forming on the tops of her feet. Like many people suffering with this condition, the darker areas darken as the afflicted areas appear more gradually contrasting. This condition seemed to disappear during the winter months; but the following summer, the affected areas spread to the legs and back. Now the condition affects 90% of the lower body and has begun to surface on the hands and face.
Last year, Kylee faced what all people with Vitiligo face at some point. Kylee entered Kindergarten and the first day of school was full of questions from the kids. The questions are pure and honest, “Is it Contagious?” “What is wrong with your skin?” etc. The teacher was prepared but needed some assistance. Kylee’s mom came to class the next day and talked to the class about Kylee’s skin. This has helped ease the transition into the public schools.
Interestingly, Kylee does not see herself as “different” but only as “special.” She spent time this summer at the annual AVRF conference in Clearwater, Florida. She had a great time meeting new friends and has returned with the validation that she indeed is not alone.
Thank you AVRF for helping Kylee and the rest of our family in this journey of Embracing our Diversity.
By Mom & Dad