Nine-year-old Kalani Pickens sleeps with her Hungarian great-grandmother’s photo beside her bed. Though they’ve never met in person, they’re connected through miles and generations by more than blood: they’re connected by vitiligo.

Kalani has lived with vitiligo for most of her young life, and her great-grandmother lived with the condition too. Two of Kalani’s great aunts have vitiligo as well. With the legacy of these women behind her, along with a strong support system in her daily life—she has 4 siblings and an “amazing” school—Kalani is growing up in a world where her spotted skin is accepted and celebrated. According to Kalani, vitiligo “makes me stand out and makes me, ‘me.’”

We spoke with Kalani’s mom Barb Brunnel about this mini Dappled Darling’s vitiligo story. Check out her interview with Living Dappled below.

Name: Kalani Pickens
Age: 9
Hometown: Lorain, Ohio
Years with Vitiligo: 7

LD: To get started, tell us a little about Kalani.

BB: Kalani is 9 years old. We live in Lorain, Ohio. Kalani is signed with PMTM modeling agency and has modeled for Highlights Children’s Magazine. She was on the cover of their Christmas issue and is in online ads. We also attended our first World Vitiligo Day in Atlanta in June. 

LD: Let’s talk about Kalani’s vitiligo – when did she first get vitiligo?

BB: Kalani was around one and a half. I noticed white spots on her fingers, I thought it was a scab healing up. Then around the corners of her eyes. I took her to a pediatric dermatologist and confirmed her diagnosis. She, of course (being that young), didn’t understand it. The doctor asked if we would like treatment; we declined. My grandmother and two aunts had vitiligo. I share their pictures with Kalani, as they live in Hungary and my grandmother and one aunt passed away.

LD: Sounds like Kalani has her own “girl gang” of family members with vitiligo! How has vitiligo impacted Kalani’s life, and how does she feel about it today?

BB: I believe vitiligo has opened up many opportunities for Kalani. We opened up an Ohio LittyLigo Chapter thanks to Sharon King, the founder of our non-profit vitiligo organization. Kalani loves her vitiligo. She said it makes her stand out, that she would be sad if it ever went away.

LD: As the parent of a child with a visible difference, how do you support Kalani in developing a healthy body image? And what advice would you give other parents of children with vitiligo?

BB: Our approach is to let her know that she is beautiful not only on the outside, but on the inside. We talk to other people with vitiligo and we all encourage each other to love themselves. She has her siblings, three brothers and a sister, who also support her. Also an amazing school behind her. My advice for other parents is do not make your child feel ashamed or sad because they are different. Let them experience it and be there for it all.

LD: We all know that vitiligo can spark some curious—and some hurtful—questions and comments. Do other kids ask Kalani about her skin?

BB: Yes, she said the main question that gets asked is if she’s wearing make-up. She tells them, “No, it’s how my skin is and it’s called vitiligo.” She hasn’t experienced any teasing or bullying, but two older students made a joke about her skin out of earshot and her older brother Chris let them know it is not okay and that they need to apologize.

LD: What advice does Kalani have for other kids or adults with vitiligo?

BB: Kalani says, “Be yourself, love yourself, be brave and have fun!!”