By Liana Jacob
MEET THE confident six-year-old with vitiligo that was initially mistaken for a RASH who has learned to embrace her appearance with the help of her mum who showed her a picture of Winnie Harlow despite being called ‘UGLY’ by kids in nursery.
In 2017 chef and director of client services, Widza Gustin (28) from New York, USA, noticed a change in her daughter, Zara’s (6) face; she was four years old at the time and she had a small patch of hyperpigmentation on her forehead.
She took her to a primary care physician who told her it looked like a rash and prescribed her steroid cream which she used on her. The cream just aggravated her skin and made her symptoms worse.
After trying for months and failing to discover what was happening with her daughter’s skin, Zara was referred to a paediatric dermatologist in March 2018 who officially diagnosed her with segmental vitiligo, a long-term condition where pale white patches develop on one area of the body.
Zara now has a large patch of pigmented skin on her face and in the beginning, she felt insecure, hiding behind her mum in public. She has been labelled ‘ugly’ by one of the children at her nursery. It wasn’t until Widza showed her a picture of international supermodel, Winnie Harlow, who also has vitiligo, that Zara began to feel more confident in herself.
Over the last year, Zara has grown to be more confident and her mum has been posting pictures of her proudly on social media to end the stigma around the condition.
“It was winter of 2017 I noticed a change in her face; a part of me thought that is was from being out in the sun during the summertime because she was in summer camp that year,” Widza said.
“She had a small patch of hyperpigmentation that started on her forehead; I didn’t think anything of it until it began on her cheeks as well.
“It wasn’t something noticeable but if you were to look very closely you could notice the difference between the right and left side of her face.
“I ended up taking her to her primary care physician; she told me it looked like some sort of rash so she was prescribed a steroid cream. I went ahead and followed directions but didn’t see any changes. I just saw that it became worse.
“So, I then began to research and see if I can find a dermatologist that specialises in kids. Once I found one her father and I went ahead and visited them and was prescribed another steroid cream.
“We were told it was some sort of infection; the more we applied this steroid cream the side effects got worse and her skin begin to dry out and flake, but the hyperpigmentation continued throughout the left side of her face.
“As soon as I saw the effects I stopped and started looking for another doctor; an allergist from New York University and he went ahead and directed me to a paediatric dermatologist within NYU and she was able to conclude Zara had vitiligo.
“The way I felt truthfully in the beginning was a little afraid because I didn’t know how I would introduce this to the world and how would I protect her from the individuals who don’t quite understand what vitiligo is.
“I used to be one of those individuals who didn’t quite understand and would honestly stare without asking questions.
“I stayed off social media for a bit as it progressed because it continued to get bigger and bigger and I continued to get more anxious.
“Some people were so welcoming to it thinking it was only a birthmark. But then you have others who would give her nasty looks; I got into many arguments back in the day by cursing people out for the looks they gave her.
“But that wasn’t the right way, educating folks who didn’t know would in turn help them in educating their kids for when other kids have unique situations like this.”
Widza then began educating her daughter about the condition and would constantly shower her with praise whenever she felt down about her looks and has shown her pictures of Winnie Harlow and Zara has since become a huge fan of the model.
She has also since opened social media accounts to post pictures of her daughter in an attempt to educate the public about her condition.
“Zara in the beginning didn’t understand and would continue to ask me when we would go out, ‘Why is this person looking at me?’ or “Mummy do they think I’m ugly’,” she said.
“This broke my heart in pieces every time she asked, and I would always build her up and tell her how beautiful she was, but she didn’t understand or feel that way for a long time.
“It wasn’t until I went to therapy, I was given the tools on how to make her feel comfortable with her unique appearance.
“I would show her pictures of Winnie Harlow, which is her favourite person right now, or even other kids who have vitiligo as well.
“When she entered nursery, a young girl would continue to pick on Zara and tell her she was ‘ugly with that thing on her face’.
“Zara was so down, and I was sad too to know that there are kids out there who can be so mean and unfortunately aren’t raised or taught how to be kind to others, but that is a huge reflection on the parent.
“Whenever Zara would go to her father’s house over the weekend, she would always express how sad she was this young lady thought she was ugly.
“In the beginning of the school year her father and I expressed our concerns to her teacher and mentioned how she should educate the young kids on the way other kids aren’t necessarily the same appearance wise.
“I was tired of hiding; Zara is so beautiful, one of the most gorgeous girls on Earth and I wanted to show the world just how dope she was regardless of her vitiligo.
“But also make people aware of vitiligo and that it’s okay. These are ‘kisses from God’ on the skin, my friend told me that once and I always tell Zara that as well.
“I wanted to embrace the vitiligo community and connect with other people – and sure enough I had so many mothers who would contact me via direct message explaining to me what they were dealing with and where did we find the oil that started to treat her vitiligo.
“I feel amazing and genuinely happy that my child can be a voice for others that aren’t heard. I’m not ashamed to answer any questions with regards to her skin condition.
“Zara is so much better. One day she came to me and told me, ‘Mummy I have a story to tell you; some girl came up to me and asked, ‘what is that on your face’ so I told her, ‘it’s vitiligo and I’m pretty with it’.
“That melted my heart and instantly brought me to tears. This is what we all wanted for Zara, for her to embrace her unique appearance and to teach people a couple of things or two regarding her vitiligo.
“The message I want to convey is that not all hope is lost, focus on the positives and what you can control. Embrace this because it’s amazing to be unique and stand out and we must uplift our kids with vitiligo or any individual with vitiligo.”