Ava’s Vitiligo began one year ago this April. She was seven. She had just come home from Field Day at her school. It happened to be one of those wonderfully hot and sunny days that tells you summer is just around the corner. Since I have that typical fair skin with a tendency to burn, I had always envied Ava’s Mediterranean complexion with its ability to capture the sun and become tan after limited one sun exposure. That day, I noticed that my daughter’s face looked a bit grubby…too much “field” I thought to myself…so I told her to wash. When she emerged from the bathroom, I saw that she had not washed it off, so I told her to wash it again. She emerged again and still there it was, so I tried to scrub off the dirt. I noticed she had white around her eyes so I asked her if she had been wearing sunglasses outside today. She said she had not. When I realized the “dirt” was not dirt at all, it hit me like a ton of bricks. I knew that my daughter’s world was not going to be the same. Her half-sister from her father had Vitiligo so I knew it was in the family. I never thought it would affect one of my children.
I went through the motions of denial, hoping that I was just being a pessimist. We took her to a local dermatologist who informed us that it was indeed Vitiligo and coldly stated that there was no cure…what he said was “Try this cream…and see me again in 2 months.” Not a cure? In this day and age? I researched Vitiligo day and night until I found myself reading the same information over and over again and wanting desperately to find something, anything, that would take this thing called Vitiligo away. We found a wonderful pediatric dermatologist who is currently treating Ava to help minimize any possible spread. But as I found out, Vitiligo has a mind of its own. Its course cannot possibly be predicted. We had to realize and to accept that we did not have control over Vitiligo. But we could influence how Ava would cope and in what manner she would perceive and tackle her new-found challenge.
We could encourage her and help her to be strong…we could empower our daughter! We began with Ava and her twin brother’s 8th birthday…usually a big bash. This year the kids were excited at the notion of forgoing traditional birthday presents and instead receiving donations. The donations would go to Vitiligo and that’s how we found the AVRF. The birthday party/fundraiser party had a great turnout. Each wonderful partygoer left with the usual goodie bag and an AVRF pamphlet on Vitiligo. In addition, we received public support from our local newspaper. The twins’ dear school nurse volunteered to give a talk and educate the class about Vitiligo.
I can say that Ava now has a new role and it’s not “Victim.” No, it’s “Warrior!” and not just for herself but for the many other children afflicted with Vitiligo. Hopefully others can benefit from Ava’s small contribution whether by increased local awareness or with a contribution to an agency like the AVRF.
Ava is eager to continue on this path. The journey can be inspiring. It can be soulful if only one is willing to see it in that light. This particular experience has brought out qualities in my daughter that I didn’t know existed. She is stronger and more resilient than ever before with a deep sense of self-pride. We thank our community for their amazing support, the AVRF for its commitment to and love for children and funny enough… we give thanks to Vitiligo, for without it my daughter may have never so gracefully uncovered her awesome inner strength.