Parent's Place

The AVRF extends their appreciation to the families below for sharing their experiences as parents of children with vitiligo. Their tireless efforts will benefit all parents, as they have already walked this long road. Sharing their stories will help lessen the uncertainties parents face as well as offer a caring approach to dealing with everyday problems. Click on the images below to read their stories.

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Paula by her Mother, Kesha

Hello, I'm the mother of Paula, a beautiful, unique, extremely helpful, funny and loving princess. We first noticed a white spot on her forehead when she was only six years old, but within months it had spread from a tiny white spot to her neck, lips, chest, arm and hair (premature gray). Paula is dark-skinned, so the spots were very noticeable. Adults and kids stared and teased, asking me or Paula what happened to her skin. As a mother it was very hard for me to stay humble because I felt her emotion and I could see it in her eyes – the sadness and pain – and it just was heartbreaking to see my child go through this, not understanding why this happened to her skin and the cruelty of people in the world.  Adults should know better, but are uneducated about Vitiligo, and kids are curious and don’t understand Vitiligo.

The emotional distress on a child or an adult who has Vitiligo can be tormenting. It has been a very hard year for Paula and her family. I always tell Paula to remember you are loved and God made you very special and unique, and to be proud of whom you are in your own skin.

Paula has seen numerous doctors.  Dr. A. Duarte in Miami Children’s Hospital diagnosed her with Vitiligo in November 2009.  She provided me with steroid cream to apply to Paula’s white spots.  Paula received extra treatments three times a week.  Her white spots are now brown spots and hardly noticeable. It’s such a blessing. I thank God for this. Because of the spot of gray hair, she still sometimes has kids that are curious and ridicule her in school and special activities, etc. 

I asked God to help me and my daughter and God sent an angel to us, Ms. Stella, with the AVRF.  This year will be the third year we have attended the AVRF conference.  It is very educational and the best thing I could have possibly done was to introduce Paula to children with Vitiligo. Ms. Stella and the AVRF have made a difference for children with Vitiligo and Ms. Stella is a gift from God.  God bless you, Stella, and thank you for all the hard work you do.  We love you so much.

Kesha,
Proud mother of my princess, Paula

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Kylee by her Mother and her Father

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

 

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Katherine by her Father, Jay

Katherine was 5 when we first noticed some pale “spots” on her body. At first we didn’t think much about it, but as summer progressed they became more obvious. Eventually we realized it wasn’t just from irregular application of sunscreen. Her pediatrician, whom we trust immensely, told us it was just a fungal skin infection, likely from being in the pool a lot. As the summer went on, it became more obvious and showed up in non-sun-exposed areas as well. Our own research led us to the likely diagnosis but we got a referral to a dermatologist. Our daughter has Vitiligo, confirmed by a skin punch biopsy.

It was difficult to hear that our beautiful bright daughter had an autoimmune disorder without a cure, so naturally we did some research. The various treatment options were discussed and we even tried some of the topical treatments for a while, but they weren’t to Katherine’s liking (and we weren’t too fond of the black box warnings). We have always tried to educate Katherine about her treatment options but strongly feel her decision should carry the most weight.

While at times her spots don’t bother her and at times they do, the AVRF website has been extremely helpful to help her realize she is not alone. The website also facilitates her talking to her friends about her condition. She even got a group together for a bake sale to raise money for AVRF which she found very empowering. We are very proud of her efforts and openness in educating others, but also realize that it won’t always be easy, especially as the teen years approach.  The AVRF website will continue to be a comforting resource and we look forward to making it to the Vitiligo Conference in Florida someday.

Jay, Proud Father of Katherine

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Ava by her Mother, Sarah

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.

 

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Aubreana by her Mother, Natalie

Hello, my name is Natalie. My daughter, Aubreana, is in the 3rd grade. Her Vitiligo started in Kindergarten. When I first took her to the doctor, he tried to tell us that the white patches of skin were because Aubreana is bi-racial, and “sometimes the colors don’t mix well.” This was so far from the truth! I went home and did some research, and from what I discovered, I believed that what she had was Vitiligo. We ended up going to a dermatologist, who confirmed that what Aubreana had was indeed Vitiligo. There is so much to learn about Vitiligo, and as many of you may have noticed, not many people are even aware that Vitiligo exists.

 Aubreana has grown so much. At first, she was discouraged about having Vitiligo; but over the past several years, she has become more and more confident. She is not afraid to tell others about Vitiligo. At home, we support her with love and reassurance. 
When we found the AVRF online, it was the first time she was able to see other children who were like her. This really helped her and gave her a sense of belonging; she knows she is not alone. At this time, we are not using any treatments for her Vitiligo. This is a personal choice, as right now, Aubreana is not interested in trying to change her appearance. 
If you are a parent of a child with Vitiligo, one important thing I have noticed and would share is that our children look to us as an example with all things. If they see us stressing and making a big deal out of it, as if we are unsatisfied with them having Vitiligo, they are more likely to feel the same way. We should strive to always remain positive, encouraging, and uplifting about Vitiligo – then they are more likely to carry the same attitude about themselves. Otherwise, they will develop a negative view of themselves, which is hard to reverse. 
Vitiligo is not something to be ashamed or afraid of, but rather, embraced with love and respect. There is no cure for Vitiligo, but we believe love can cure the things medicine cannot. Be encouraged; we are not alone. God bless!