BELVANA and Natalino are regularly asked questions due to their daughter’s condition. And these questions range from being asked out of intrigue to ignorance. The couple have three children; five-year-old Zivah, two-year-old Zayana and six-month-old Xander. Zayana has albinism and when the family are out in public, they are approached by strangers. Natalino said: “People ask me unnecessary questions like whether she is my child or not?” Belvana explained that when she is out with Zayana and Zivah, people approach her too. She said: “They'll ask if they share a dad, or people would want to touch her hair, or they'll ask me if I'm the nanny.” The mum-of-three began posting content on social media and creates informative videos about albinism as well as family life. She said: “I like to use my platform to create awareness about albinism, because I realise that people are actually ignorant about it.” The family hopes to help educate people and address some of the discrimination people with albinism face. Belvana said: “My hope is really that she grows into a confident young girl. But also that she doesn't let comments get to her.”
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00:00 My daughter has albinism.
00:02 Zayana's hair is yellow.
00:04 Yellow! That's me!
00:07 They'll ask me if they share a dad, or people would want to touch her hair, or they'll ask me if I'm the nanny.
00:13 People ask me unnecessary questions like whether Zayana is my child or not.
00:17 Zayana's birth was... it was quite a story.
00:22 This is Ziva.
00:25 And she is... how old are you Ziva?
00:28 Five years old.
00:30 And this is Zayana. Zayana, how old are you?
00:32 She's two.
00:33 And baby Zander is six months old.
00:35 Ziva is at the curious phase, so she questions everything now.
00:40 Zayana, she's sassy, she's strong-willed.
00:43 And Zander, too early to tell.
00:45 He's a friendly baby, and he just smiles at everybody.
00:48 Just for the record, she usually cooks, not because I don't know how to cook,
00:54 it's because she cooks better than me.
00:56 My hair is brown.
00:58 And what colour is your sister's hair?
01:01 It's yellow.
01:02 Yellow! That's me!
01:05 Yellow!
01:07 Don't be shy.
01:09 Don't be shy!
01:11 His hair is yellow because he has albinism.
01:16 We met in university.
01:19 We have this discussion so often.
01:22 Because I literally remember what she was wearing the very first time I saw her.
01:26 Or we saw each other, when she claimed that she didn't see me.
01:30 We've been married now, happily, I might add, for about almost five years.
01:36 Five years this year.
01:38 I had three, but it's only five years.
01:40 Zayana's birth was...
01:43 Yeah, it was quite a story.
01:48 I had COVID at the time.
01:50 He had just lost his mum.
01:52 So we weren't together.
01:54 He went to Angola to be with his family.
01:58 So I didn't think much of it when they showed her to me.
02:01 And because I had COVID and she came early, they separated us.
02:05 I went into isolation and then they took her into an incubator.
02:11 They eventually started showing her to me on a monitor.
02:13 And I was like, "Okay, this baby really has yellow hair."
02:16 I was told that she had albinism.
02:19 They had to test to make sure.
02:22 And it was quite surprising.
02:24 I woke up with a picture.
02:26 And it didn't make much of the skin,
02:29 because Ziva was also born with very light skin and then eventually darkened a bit.
02:33 So I just thought the light hair was dirt.
02:36 I actually remember constantly telling them, "She has albinism."
02:40 And you're like, "Okay, yeah, okay."
02:42 Yeah, so?
02:43 So the doctors were quite helpful in just telling us what we need to look out for.
02:49 We also joined NOAA.
02:51 NOAA is, I think it's National Association of Albinism and People with Hyperpigmentation.
02:58 And they sent us a package and then a book, which was titled "Raising a Child with Albinism."
03:04 And that really helped.
03:05 I think I still have it somewhere in the house.
03:08 Is it not with you?
03:09 You were meant to read it next.
03:10 Yes, it's with me.
03:12 I just never got to.
03:13 I learned from her.
03:15 Albinism is a genetic condition.
03:17 Both parents have to have the gene.
03:20 It's a recessive gene.
03:21 And it causes a lack of melanin in the hair, eyes, and skin.
03:26 In Ziana's case, it's reduced because she still has some pigmentation.
03:31 Her hair is yellow and her eyes are green, sometimes blue.
03:35 And her skin is creamish.
03:37 So she still has a little bit of pigmentation.
03:39 She's what they call oculocutaneous albinism.
03:43 She's type 2.
03:44 I do videos so that I can create awareness about albinism.
03:51 Because I realize that people are actually a bit ignorant about it.
03:56 Ziva just recently started asking questions.
04:00 The first question she asked when I was pregnant with Zanda is,
04:03 "Am I going to have a white baby or a black baby?"
04:06 And then I attempted to tell her about albinism.
04:11 Albinism is caused by genes.
04:13 And her response was, "Okay, so does that mean that all of my white friends have albinism?"
04:19 And I was kind of left like, "Okay."
04:21 And I thought it was maybe a bit too much to explain to her about genetics and all of that.
04:25 She understands that her sister is different, but she's still kind of a part of our family.
04:29 Not kind of, well, she is a part of our family.
04:31 When people ask, I say...
04:35 Because she has albinism.
04:37 Now what is albinism to you?
04:39 Albinism is when you don't have color in your eyes, hair, and skin.
04:45 What negativity have you experienced online?
04:49 I mean, one time somebody said, "How could she be black if she's literally whiter than white?"
04:55 And, yeah, it was just, again, one of those moments where you have to educate people.
05:01 A lot of people have come out and said they actually didn't know.
05:05 And they really appreciate me doing these videos because they can learn.
05:09 My platforms is really just about navigating raising three kids that are extraordinary.
05:15 The perception that people, albinism cannot be outside, and that's not true.
05:19 She's a normal child. She likes to go to the playground.
05:21 She goes to school. She has friends. She goes to birthdays.
05:25 So I try and document a lot of that.
05:27 Whenever we get ready to go out, we have to put some sunscreen on.
05:32 Zianna especially.
05:34 Just because her skin is a little bit more sensitive to the sun.
05:39 There, let mommy help you.
05:41 Now that's enough sunscreen.
05:43 Can I put here on your forehead? You're missing a spot.
05:45 It really isn't any different to other kids in that all kids wear sunscreen when they're out.
05:53 With her, maybe additionally on top of the sunscreen, she has to wear a hat.
05:57 But most of the times, halfway through the outing, this is off.
06:01 Sunglasses is also very important because people with albinism have photophobia.
06:05 Because of the lack of melanin in the eyes, we also get some sunscreen on Ziva.
06:12 It's just to protect the skin a little bit from the sun.
06:16 Ready to go? Do you know where we're going?
06:18 To the playground.
06:20 We go downstairs and sometimes we stare at both of them actually and compare Zianna with Ziva
06:24 just to try to figure out if they look alike.
06:26 Every opportunity is an opportunity to educate.
06:30 He doesn't get a lot of it because I do the outdoor activities with him a lot.
06:35 So I always come back to him and say, "Oh, this person said this and that."
06:38 And he'll be shocked because he doesn't get a lot of it.
06:41 When people ask me unnecessary questions like whether Zianna is my child or not,
06:46 in the beginning it would really get my nerves, but I would never necessarily react to it.
06:53 I would always just politely explain that, "Yes, it's my child."
06:58 So what negativity have you experienced when you've been out in public?
07:01 So it's mostly been curious questions more than negativity.
07:06 And I don't think people realize it comes out as ignorant or negative,
07:10 but I think it doesn't come from a bad place.
07:12 I'll get questions around, "Is her dad white?" especially if I'm not with my husband.
07:16 Or if I'm with Ziva and Zianna, they'll ask if they share a dad.
07:20 Or people would want to touch her hair, or they'll ask me if I'm the nanny.
07:24 It happens so quickly.
07:26 And then people just don't know how to act, and I don't know how to act.
07:28 Or people make remarks about, "Oh, I really wanted a child with albinism, but I didn't get one."
07:34 I'm not realizing that it's genetic, you know.
07:37 My hope is really that she grows into a confident young girl,
07:43 but also that she doesn't let comments get to her.
07:48 She's a very vibrant, very lively child.
07:51 I wish that she stays as happy as she is right now.
07:53 Yeah, we could consider ourselves blessed.
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