27-YEAR-OLD Alexandra was born with a rare genetic condition called Williams syndrome, which makes her one of the most friendly people you can come across. Alexandra describes the condition as "kind of like Down's syndrome, but we're missing chromosome seven." While the condition affects people differently, older sister Victoria identifies many of the classic traits in Alexandra: "It's characterised by cognitive and developmental issues, highly sociable personalities, an affinity for music [and] similar facial features" - including "starburst-blue eyes." The two sisters are inseparable, spending every day together - and Victoria insists that "it doesn't feel tiring to match her happy energy - she's always been that way, it's always been a consistent in my life." But she is very protective of her sister, as Alexandra's highly sociable tendencies meant that she used to "wander off and just give anybody a hug." This was something that Victoria had to teach her not to do, out of concern that "not everyone is friendly, not everyone has good intentions." Alexandra's zest for life is still as strong as ever though - and she has found a passion for clothing and fashion. In recent years the sisters have developed an online business selling clothing that they design and make together - and Alexandra takes the lead creatively: "All of the designs have been Alexandra-approved before they go on the website." Their items are often emblazoned with mottos that Alexandra resonates with - such as "Stay Weird" and "Normal Is Boring" - and Alexandra models every item herself. The sisters donate a percentage of the profits they make to the Williams Syndrome Association, a charity that has introduced Alexandra to other young people living with Williams syndrome "all over the world" - close friends she now talks to every day without fail over video call. Despite the connections Alexandra has made, Williams syndrome is so rare that the sisters have felt it important to use their social media channels to educate on what living with Williams syndrome looks like. They post regularly to Instagram and TikTok - despite Victoria initially feeling very cautious about exposing her sister to negativity. Her fears were realised when she saw trolls "make comments about my sister" - something that did "irk" her in the beginning - but Alexandra's defiant positivity has enabled them to create "platforms where there is love." In doing so, Victoria has been able to "see things from [Alexandra's] point of view" and the two sisters are closer than ever. Alexandra knows she has a best friend and staunch ally in Victoria - and the two sisters are out to remind us all that "you should be happy with what makes you unique, because normal is really boring."
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FunTranscript
00:00 My rare condition means I love everyone.
00:04 Williams syndrome is a super rare genetic condition characterized by
00:09 cognitive and developmental issues and highly social personalities.
00:14 Oh, okay.
00:16 I used to go up to strangers and hug them and Victoria taught me not to.
00:23 I worry people will take advantage of her, but I will always be there to protect my sister.
00:27 You have been there for me since I was born.
00:31 Yeah.
00:32 I'm about to call all my friends.
00:35 Oh, Lord have mercy. Hopefully it works.
00:38 I'm Alexandra. I'm 27 years old and I have Williams syndrome.
00:43 I'm Victoria. I'm 30 years old. I'm this one's sister.
00:47 Williams syndrome is a condition kind of like Down syndrome, but we're missing chromosome 7.
00:55 It's characterized by cognitive and developmental issues.
01:00 Along with the developmental delays, they also have very highly social personalities.
01:07 Hi, I'm Alexandra. I have Williams syndrome.
01:10 They all have an affinity for music.
01:12 Do you know Nickelback?
01:13 I do.
01:14 Love that band.
01:16 They have similar facial features and y'all have a wider mouth.
01:21 And then y'all usually all have like the starburst blue eyes. A lot of y'all do.
01:27 Oh yeah, if you came close to my eyes, you would see it.
01:30 Hi.
01:31 I talk to my friends that have the same Williams syndrome.
01:36 She's made Williams syndrome friends from all over the world.
01:41 They Facebook Messenger all the time, like all the time.
01:45 I'll be like sewing and I'll look over and some of them are sleeping and they're like watching each other sleep.
01:53 Some of them are like dancing and doing their own thing.
01:56 We're really crazy.
01:58 What do y'all ask me to do to Alexandra when y'all are on the phone?
02:01 Oh, no, no, no, no, no. I know where this is going. Don't.
02:04 Huh?
02:06 And tickle her.
02:07 And tickle her.
02:08 It doesn't feel tiring to match her happy energy.
02:13 She's always been that way. It's always been a consistent in my life.
02:17 Me and my sister spend every day together.
02:20 I love hanging out with her.
02:22 We are going to the thrift store to find new items so we can create something really cool today.
02:31 Put your shoes on, girl.
02:33 Sometimes we argue.
02:35 I mean, we're sisters. That's what sisters do.
02:38 She's a precious sister. That's why.
02:41 Where's your jacket?
02:42 Throw me mine.
02:44 Thank you.
02:47 Totally threw it, so I threw it.
02:49 You did. You did throw it.
02:52 My parents were always very open and honest about her disability.
02:59 Our mom, she took her out of school and she got homeschooled where she could have the one-on-one attention that she actually needed.
03:06 It was kind of in that point where kids aren't so as accepting when they kind of get to that age where they start forming friend groups and, oh, she's a little different.
03:17 That's something I really, I don't think she would have been able to handle.
03:22 But she didn't have to go through that.
03:24 No.
03:25 Are you happy? Are you happy about that?
03:27 Oh, yeah.
03:28 Oh, this is not as cute as I thought it was.
03:35 She has so many cute clothes. It's ridiculous.
03:40 I love clothes. They're so pretty.
03:43 Well, we like fun, happy, like, funky clothes.
03:48 It's kind of hard to find, so we just make our own.
03:51 It's like treasure hunting. We like treasure hunting. And then we like creating, so we treasure hunt and create all at the same time.
04:00 That's funky.
04:02 What does it make you feel when you find something that you really like?
04:05 I get excited immediately.
04:08 She goes like this.
04:10 She got blue nails.
04:12 Those are cute.
04:13 Thank you.
04:14 Are you a people person at all, maybe?
04:16 Yeah, if I know them well enough.
04:18 Yeah, but back when you were younger, it wasn't if you knew them well enough.
04:23 I used to love hugging people that I didn't know because it made me happy.
04:29 She would, so she would wander off and just give anybody a hug, which is sweet.
04:34 And most people don't mind. But, you know, some people do mind.
04:38 Not everyone is friendly. Not everyone has good intentions.
04:41 It took a while for you to understand that.
04:44 Victoria taught me not to.
04:48 I worry people will take advantage of her, but I will always be there to protect my sister.
04:52 In the car.
04:54 Good job.
04:56 So the mottos that are on our clothes, we try to use phrases that are like be yourself, stay weird, normal is boring.
05:05 You know, if you're weird, that's fine.
05:07 Like embrace how you're unique.
05:08 I love that one.
05:10 You like this one?
05:11 Of you?
05:12 Yeah.
05:13 It says normal is boring.
05:15 And it has the Williams Syndrome logo on there as well.
05:17 So any of our items, like t-shirts wise that we make that has the Williams Syndrome logo, we donate a portion of our profits to the association.
05:26 These colors match together.
05:29 You like those colors together?
05:30 Yes.
05:31 So I do the sewing because I enjoy it and she like has no interest in sewing.
05:36 But she helps.
05:38 You want to cut it?
05:39 When she cuts, it's a little jagged, but I like that.
05:42 It just adds some uniqueness to it.
05:44 She likes to, I mean, have the final say so on the designs to make sure that they're Alexander approved.
05:53 So all of the designs have been Alexander approved before they go on the website.
05:58 And I'll get something and I'll say, what do you think about this?
06:01 And she'll be like, no, that's ugly.
06:04 And so I'll try again until--
06:05 I'll be honest with you.
06:06 I will tell her how it is.
06:08 This one's one of my favorites because it has me on it.
06:12 [LAUGHTER]
06:14 You cut off the bottom to this to make it like frayed and worn looking.
06:19 And who models the clothes when they're done?
06:21 [MUSIC PLAYING]
06:24 [LAUGHTER]
06:26 Oh, OK.
06:28 Walk towards me with your model walk and runway go.
06:31 [MUSIC PLAYING]
06:34 And then strike your pose.
06:37 Good job.
06:38 Alexander, how do you feel when you're modeling?
06:41 I feel good.
06:43 She is the best model.
06:45 Oh, oh, I look good.
06:48 Which one do you think?
06:49 Oh, that one's cute.
06:50 You like that one?
06:51 Yeah.
06:52 I like that one.
06:54 And we make videos for-- what do we make videos for?
06:58 TikTok or Instagram.
07:00 Are you ready?
07:01 Yeah.
07:02 I feel like I have tried to create platforms to where it is positive and there is love.
07:09 Everyone gets trolls, and it would really irk me when they would make comments on my sister.
07:16 And that was part of the reason why I was hesitant in the beginning to even put her on social media.
07:20 I mean, there are things that could get her down, but she chooses not to.
07:26 So it makes me proud.
07:28 Just the way that she loves and cares about people is a good reminder for me to just see the world from her point of view.
07:38 Because I think our world, especially nowadays, just needs a lot more of that.
07:43 Why are you proud of me?
07:45 Because you have been there for me since I was born.
07:49 Yeah.
07:51 But I'm always going to be there for you.
07:55 That's what sisters are for.
07:57 Huh?
07:59 You should be happy with what makes you unique.
08:03 Because normal is like really boring.
08:05 Yeah.
08:06 [MUSIC]
08:12 [BLANK_AUDIO]