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The mother of a 5-year-old girl with albinism shares how cosplay and catwalks have helped her daughter combat the stigma of the condition.Editor’s note: Sun Chenxi, nicknamed “Elsa,” is a 5-year-old girl from China’s eastern Anhui province who has albinism, an inherited condition that presents in extremely light skin, hair, and eyes, as well as causing other ailments, due to a melanin deficiency. To help her daughter live a confident life and educate the public about the condition, Sun’s mother takes every opportunity to place her among crowds, even encouraging her to take center stage at a fashion show. Here, her mother shares their story.During this year’s National Day holiday, I took my daughter Elsa to Beijing, where her father works. As we got off the subway one time, she spotted a female cosplayer with white hair, and followed her. When we go to get new glasses or to the hospital, Elsa will occasionally meet other albino children, but she had never seen an adult with that kind of white hair before, especially someone dressed so nicely. Elsa admired that cosplayer so much.Shortly after, we met a man in a white wig who was cosplaying as Kaveh, a character from the mobile video game Genshin Impact. He got off the subway and took a photo of us while I was taking a picture of my daughter and the female cosplayer. He squatted down and said to my daughter, “You’re such a beautiful girl. There are many people with hair like yours at comic conventions, and there’s one being held tomorrow. You can ask your mother to take you.” So, I made a note of the address of the convention using my cellphone.![]()
Elsa meets with cosplayers in Beijing, October 2024. Courtesy of the interviewee
I knew nothing about comic conventions. I used to find it odd seeing cosplayers on the subway, wondering how they could go out dressed like that. When we arrived at the convention, the venue was so big, like a different world. My daughter was stunned. I asked her, “Do you see people with green hair, blue hair, and pink hair? There are also many people with white hair. White hair is also very beautiful.” She answered happily, “Yes!” I wanted her to feel confident there.At first, she was too shy to approach people; she’d just tilt her head to look at them cautiously. Eventually, many people began to ask to take a photo with her. She would nod her head shyly. My daughter paid close attention to women with white hair. I saw one cosplayer dressed as Queen Elsa from the Disney movie “Frozen,” whom my Elsa is nicknamed after. I led my daughter to her, and we took a photo together.A video of my daughter at the convention also became widely popular online. After reading many comments, I learned a lot about cosplayers. While at the comic convention, I thought they were so beautiful, and I wish now I’d taken more photos with them. I also understood why so many people love such conventions, because everyone is so happy there, and they can express themselves.I was so touched during that event, as my daughter received many compliments and recognition. When people said, “Your daughter is so cute,” I encouraged her to thank them herself, hoping to make her more outgoing. No one refused my daughter’s request to take a photo; they were all enthusiastic. No one inquired about Elsa’s condition either. There were young people everywhere, and they were diverse and inclusive. They were free, and they thought they had just met a cool little girl.As a newborn, Elsa was covered in white fetal hair. When the doctor told us it was a girl, I was happy because my first child was a boy. Then the doctor froze and said her hair was white. He suspected albinism, a rare genetic disease that can’t be detected by normal birth tests.My relatives came to see me in the hospital, stayed for only about five minutes, and left. I heard them sigh, and I cried. I could understand their reaction; they were conservative and afraid of being criticized. While breastfeeding, I heard that if I ate foods rich in melanin it could help Elsa, so I ate black sesame paste, which turned out to be useless because her specific type of albinism means her body lacks the enzyme to synthesize melanin.At that time, I was in Beijing. I didn’t have many friends, and I felt depressed. I filmed a short video and posted it on social media. In it, I suggested calling my daughter “Buqi,” meaning never give up. Some netizens argued that this might be hard to explain in the future, while another remarked that she had the same hair color as Queen Elsa. And that’s how my daughter got her nickname.One of the biggest problems for albino children is poor eyesight. While watching TV, her brother would sit on the couch, but she had to sit much closer, on the coffee table. We also had to ask her teacher at school to let her sit in the front row. Another problem is that she’s sensitive to light. Outside, she usually needs to wear sunglasses. I will always have a pair for her in my bag. We’ve also fitted blackout curtains throughout our home and only use soft lighting.When she was younger, she noticed that her brother never wore sunglasses, so she didn’t want to wear them either. However, when she took them off, she couldn’t open her eyes and would get angry. I tried my best to comfort her. She slowly accepted the situation and adapted. Before giving birth, I liked sunny days. Now I’ve changed, because when there’s sunshine outside, Elsa can’t open her eyes, and she has to go out well protected, including putting on heavy sunscreen and wearing protective clothing. I now like cloudy and rainy days instead.When Elsa was 4 months old, I took her for her vaccinations. I put a hat on her and wrapped her head tightly, not letting a single strand of hair slip outside, as I was afraid that people would stare. When people asked if she was multiracial, I would go along with it and decline to give further explanation, like many parents of albino babies do.Her father handled it better than me. When Elsa was a newborn, I cried several times, but he comforted me by saying, “You see how beautiful our daughter is. Why are you crying?” One time, as we drove to a shopping mall, he questioned why we always had to cover her up. I was torn up inside, but later I realized that if her family couldn’t accept her, Elsa might struggle to accept herself.It was the first time we ever took her hat off outside. Her dad walked ahead with her in his arms and I followed behind. I thought people might walk away from her, but when they saw her, they all said, “She’s so cute.” But there was a time when she was 1 year old, she was playing in a neighborhood playground and a little boy was scared upon seeing her and began to cry. She was at a loss, and I had to pull her away. I felt quite helpless.After she could walk, I intentionally took her to crowded places, such as shopping malls, night markets, and squares where older people gather to dance, and I encouraged her to play with other children. In summer, we took her to the beach because it’s cooler there and crowded, which was a good way to help her develop confidence.I’m worried that her appearance will cause her to have low self-esteem when she reaches adolescence, so I like to take her to crowded places. There, we’ll hear various comments from different kinds of people, and she might get used to it.In the summer holiday, in a shopping mall, a little boy, who may not have known what he was doing, said to her directly, “You’re so ugly.” She instantly broke down in tears. She turned to me and hugged me. Back at home, she said she didn’t want to play outside. I asked why, and she said, “Why do you and my brother have black hair, but I have white hair?” I gave her an example: “Remember the foreigners we saw? They have white hair, blond hair, and brown hair, and are all so pretty.” I then told her the world is meant to be colorful.I played the movie “Frozen” for her, and she thought Queen Elsa was beautiful. I asked her, “Do you want me to dye your hair dark now?” But she refused. “That way, people might not say I’m beautiful,” she said.![]()
Elsa dressed as a princess. Courtesy of the interviewee
Elsa is 5 this year and will be in first grade soon. I take her to the primary school when I pick up her brother, to let more children get to know her. That way, they might not be so curious when they see her in the future.Some elementary kids think she has a disease. When children whisper and discuss her appearance, I always encourage her to explain her condition to them. She will say, “I’m an albino, I just lack some melanin.” I’ll also say to some children, “Doesn’t she have the same hair as Queen Elsa? Isn’t it pretty? Can you be friends with her?” Then they will all just start playing together.From a very young age, I’ve always told Elsa that she’s an albino. I didn’t want her to find out from someone else, and I didn’t want to keep saying she was a “little angel,” which might cause her to live in a fairytale. I want her to know that she is the same as other kids, she just lacks melanin. She could have received a disability certificate when she was very young, but I declined, as I didn’t want her to be defined as a disabled person. I think she is excellent, and there is no difference between her and other kids. It was only this year, when her teacher explained that the school offered a subsidy for disabled children, that we applied for a certificate for Elsa.I heard from other parents in our situation that some private kindergartens had rejected albino children because of concerns that their poor eyesight could result in injuries, and that they would be held responsible. When it was time for our daughter to start preschool, my husband said if Elsa was rejected, we could enroll her in a special school. I felt that would be hard to accept. Fortunately, she wasn’t turned away, and the teachers and her classmates have all been very kind.Recently, we moved home, and Elsa started at a new kindergarten. I was worried at first, but at a parent-teacher meeting for the parents of incoming students, the teacher talked a little about the class having an albino child with white hair. I heard one parent ask, “Is she infectious?” I explained about Elsa’s condition, emphasizing that albinism is not contagious. I also shared several pictures of my daughter and encouraged other parents to tell their children about their new classmate, so that they wouldn’t be surprised by her appearance.After her first day at the new kindergarten, I asked Elsa, “Are you happy today?” She said she was very happy as her classmates called her “little angel” and “princess.” I heard from teachers later that one boy had touched her face gently, and then told the others, “She doesn’t have powder on her face, it doesn’t come off.”When Elsa was still little, I used to worry that she might have a hard life, and it would bring me to tears. Later, I realized that when she goes to primary school and middle school, we will have to face more people and more issues. Instead of worrying about uncertainties, we should focus on the present and seize the day. I hope that she will become a sunny and confident girl.Elsa is growing up and starting to care about being pretty. I help her dress nicely, braid her hair, and organize her clothes. I let her try various casual styles. She feels pretty cool in her sunglasses now.![]()
Elsa takes part in a fashion show, 2024. Courtesy of the intervieweeAfter attending the comic convention, we were invited to take part in a fashion show organized by a children’s clothing brand. I thought it over, as I was concerned that Elsa wouldn’t be able to perform. But I wanted her to have the experience, so we decided to go. Seeing the other kids on stage, she became shy. However, when it was her turn, she went on confidently. Wearing a princess dress and crystal shoes, she enjoyed the moment, even with many cellphones pointing at her. She held her head high, and I knew then she would be great.As told to reporter Wei Xiaohan.A version of this article originally appeared in White Night Workshop. It has been translated and edited for brevity and clarity, and is republished here with permission.Translator: Eunice Ouyang; editors: Wang Juyi and Hao Qibao.(Header image: Elsa poses with cosplayers in Beijing, October 2024. Visuals from the interviewee and VCG, reedited by Sixth Tone)Download the new Sixth Tone app at the App Store or Google Play
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