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LIZ and Maddie Adams are a pair of fraternal twin sisters from New York. Liz was born with Goldenhar syndrome, a rare craniofacial condition that left her with a missing ear, an underdeveloped eye, a missing jaw bone, and an asymmetrical face. She had to undergo over 30 surgeries and spent the first four months of her life in ICU. Growing up with the facial difference wasn't easy, but Liz was thankful for having her twin sister by her side as they navigated the journey together. Two years ago, Liz and Maddie launched their own podcast, Courageously Kind, dedicated to kindness, acceptance, courage and inclusivity. By sharing their story, the sisters hope to raise awareness of the condition and inspire others to love their authentic and unique selves.

Follow Liz and Maddie:
https://www.courageouslykind.org
https://www.tiktok.com/@courageouslykind
https://www.instagram.com/liz.adams22/
https://www.instagram.com/maddie_adams22/

Category

🎈
Fun
Transcript
00:00Even though we are fraternal twins, we do still look very different.
00:03I was born with a condition called Golden Heart Syndrome.
00:06I'm missing an ear.
00:07My right eye is underdeveloped.
00:09My jaw is very underdeveloped.
00:11As a little kid, I never registered that Liz looked different until we got to school.
00:16Other kids had no idea why she looked the way she did.
00:19That's when I really realized, oh gosh, I look really different.
00:24I get the question a lot, what's wrong with my face?
00:27Why did you look like that?
00:28Why were you born?
00:30Really nasty comments.
00:32Sometimes kindness is not easy and we need to find that courage within ourselves to spread
00:37kindness and make the world a better place.
00:40I don't know if I'd be here if I didn't have Maddie as a sister.
00:44I think she was meant to be my twin to help me out.
00:48I think my eyes are a little bit of a catch-22 because they are different.
00:54I have, like, star tissue on this eye and I have a little dot right there, so they're very noticeable.
01:02Hi, I'm Maddie.
01:03And I'm Liz.
01:04And we're twin sisters.
01:05We're 19 years old and we're from New York.
01:07When you think about twins, you have this image in your mind of two people that looked exactly alike, which
01:13is not true.
01:14There are fraternal twins out there that look different.
01:15But especially in our case, even though we are fraternal twins, we do still look very different.
01:20I feel like makeup was never something that either one of us felt like we had to wear.
01:27It really was just kind of something we could play with and have fun with.
01:30You shouldn't feel like you have to do any sort of correcting or fixing to your face if you don't
01:36want to.
01:36Right. Wear it because you want to wear it.
01:38Right. Exactly.
01:40I was born with a condition called Golden Heart Syndrome.
01:43It's classified as a craniofacial birth defect, meaning craniohead facial face.
01:49I'm missing an ear on my right side.
01:52My right eye is underdeveloped.
01:55My jaw is very underdeveloped.
01:57I'm missing part of my mandible.
01:59As a little kid, I never registered that Liz looked different until we got to school.
02:03And I realized that other kids had no idea why she looked the way she did or what the story
02:10was.
02:11We always used to play princesses, all the girls in my class.
02:15And there wasn't a princess for me to play.
02:18Getting hit with questions like, what's wrong with your face?
02:21Or why do you look like that?
02:23When I was four years old, I did not know how to answer that.
02:26Kids don't know how to include people that look so different.
02:29And that's when I really realized, oh gosh, I look really different.
02:34I really didn't start to have a lot of self-confidence until high school.
02:37I found theater, and I loved being on stage.
02:41I'm so used to people staring at me, but the beautiful thing about being on a stage is that
02:45they're staring at you for a good reason.
02:48So that's where my confidence came from.
02:50You've got my computer here, which you can't see a notebook at all times.
02:54We're big into note tape.
02:57Together we run Courageously Kind podcasts to promote kindness, acceptance, and inclusivity.
03:02Typically, we'll do a little journey for us, and then we'll come together and bring for
03:07what we've been thinking about for a week.
03:10We started Courageously Kind back in August of 2020.
03:14Liz did a video for Face Equality International in the spring of 2020.
03:19Say hi.
03:20Be friendly.
03:22People who look different just want to be treated equally.
03:26I kind of saw this spark in her.
03:29She got really excited when she went to film this interview, and I kind of said to her,
03:33maybe you should think about really speaking up and being an advocate for this.
03:38I was so scared to put my voice on tape.
03:41I worked really hard to have a clear voice.
03:44I went to speech therapy for years.
03:46I've had lots of surgeries.
03:48So just putting my voice out on the internet for anyone to listen to was terrifying.
03:54I had a topic in mind that we've been talking about a lot, and that's imposter syndrome,
03:59which I think we all feel and can be really detrimental to our image of ourselves.
04:05The ultimate goal is to get some positive and accurate representation of people with
04:10facial differences into mainstream media.
04:13Most of the questions we get are really well-intentioned.
04:15But sometimes, particularly on live streams, we get a lot of questions that are not so
04:22kind and are kind of like trolling comments.
04:24I get the question a lot, what's wrong with my face?
04:27And that might seem like a harmless question, but just a connotation that different equals
04:32wrong.
04:32Why did you look like that?
04:34Why were you born?
04:35Really nasty comments like that.
04:39We try and turn everything into like a teaching moment or a learning moment if we can.
04:43Sometimes people are not open to receiving that sort of feedback, and in that case, we just
04:48kind of move on and go on with our lives.
04:51We've gotten so many messages from people who have facial differences or just have disabilities
04:56in general, and it's really heartwarming to read messages of people saying that they
05:01feel a little bit more confident or a little bit more comfortable with themselves because
05:05of what we're doing.
05:06I wish people would know that people with facial differences can live happy lives.
05:11We can be happy with the way that we look.
05:13I think beauty is a feeling rather than a characteristic.
05:17It's not about what you're wearing or how you look.
05:20It's about how you feel.
05:22I admire Liz's courage.
05:25I admire her perseverance and also her outlook on life.
05:29Eventually, I think we will branch out and do different things, but I think in a perfect
05:34world, we would work together in some capacity.
05:37I think we just make a really great team.
05:39I don't know if I'd be here if I didn't have Maddie as a sister.
05:43She has been my best friend, my therapist.
05:49She has just walked through life with me the whole time, and I'm so, so grateful.
05:54And to have such a fierce advocate and protector next to me has made this condition so much
06:02easier.
06:03I think everything happens for a reason, and I think she was meant to be my twin to help
06:08me out.
06:08Thank you very much.
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