Taking Control of the Narrative

myFace, myStory

On this month's myFace, myStory podcast episode host, Dina Zuckerberg, is joined by Amy and Lazer Schefer, a dynamic mother-daughter duo who have turned their personal challenges into a mission of advocacy and support for the craniofacial and rare disease communities. Join us as we explore their inspiring story of resilience, the challenges they’ve overcome, and the impact they continue to make on the lives of others.

- [Announcer] Welcome to "My Face, My Story: "Voices from the Craniofacial Community," with your host, Dina Zuckerberg.

- Hello, and welcome to "My Face, My Story: "Voices from the Craniofacial Community." I'm Dina Zuckerberg, your host and director of Family Programs at My Face. Like many of you listening, I have a craniofacial difference. I was born with a cleft lip, a hearing loss, and no vision in my left eye. "My Face, My Story" is about people like us being seen and heard, about sharing stories within the craniofacial community and with others. This podcast episode is made possible through support from the Integra Foundation, committed to improving lives. By the way, whether you're watching on YouTube or listening through Apple Podcasts, click "Subscribe" now and we'll keep you updated on future episodes so you never miss out. And if you're a fan of "My Face, My Story," please rate and review the program on Apple Podcasts so we can get our message of inclusivity and empowerment to more people. Today I am joined by Amy Schefer and her daughter, Lazer. Amy is a passionate advocate for the craniofacial and rare disease communities. She is Lazer's mom and a director of Advocate Angel, an organization that helps guide families through the medical maze. She shares her intense journey as a medical mom, navigating with Lazer through dozens of surgeries and challenges to engaging in pioneering research efforts and advocating tirelessly in one-on-one family assistance endeavors and legislative action. Lazer is a 20-year-old patient advocate and public speaker with Goldenhar Syndrome. She has appeared on the TLC series "Two in a Million: A Face Like Mine." She has also appeared on numerous podcasts and radio interviews and has moderated panel discussions at Seattle Children's Hospital. Welcome Amy and Lazer. I really look forward to our conversation.

- Hi.

- Hi.

- Hello.

- Us too.

- Yeah. So, Amy, can you share the early days of your journey with Lazer's diagnosis and what were some of the initial challenges you faced as a mother navigating the medical care system and her care?

- Well, we're country folk, and one of the biggest challenges that we had is we were at a teeny tiny hospital, nobody had ever heard of Goldenhar. We had a great emergency room, I mean NICU doctor, who stayed up all night trying to figure out what condition this may be. But the fact that we were farther away from the central areas where medical care happened made it more difficult, And then early on, we also, we knew we needed to get to a craniofacial team.

- Right.

- The team that was assigned to us through our insurance was a not well-known team. They met once every three months. They brought, they brought somebody in who said, you know, who was a professor emeritus, you know, who said, "Wow, this is really, "you won't find a kid like this very often." And that was kind of like-

- Wow.

- Their amassed wisdom, and it was hard... to get referred to the top team in the state, and the top team in the state was in disarray. They kept losing their funding. So, one of the biggest challenges for me, aside from not knowing ahead of time, despite all the ultrasounds and stuff, that Lazer was gonna be different, one of the biggest challenges was just getting situated in the right medical team so that the quality of care could be better than what we started with.

- Mmm, right. And-

- Yeah.

- So you did not know, and did, and was there anybody else in your family that you knew of that had Goldenhar or? No, so this was a total-

- No, the one and only.

- Surprise for you.

- Yeah. And luckily my dad was a psychiatrist, so he went to medical school. So he asked all of his med school buddies, "What do you do in a case like this?" And they said, "Find a craniofacial team." That was pure luck-

- Right.

- And not something that most people have. And, you know, some of the reason I just became an advocate is because... the information that families have access to is so scattershot.

- Right.

- And if you don't have that information, your results are way different. And not only that information, but lots of other kinds of information. So-

- Mm-hmm.

- We also just didn't have really great facilities, we didn't have great home health agencies, we didn't have, you know, it was, I had to learn how to fire people who were coming to take care of Lazer who-

- Right.

- Who, you know, didn't do as good a job as they needed to.

- Right.

- Lazer had a trach and a G-tube at the beginning, and other things, and it, you know, substandard care doesn't cut it.

- Right.

- So, there are a lot of challenges, and you know, common sense, you would think, okay, when any person is born, they're, you know, the medical system will wrap you in its arms and all will be well, you'll know what to do, you'll be speaking with the right people, and it's kind of, no, you actually have to take some action on behalf of yourself and your family.

- Right.

- To get that, so.

- So, Lazer, growing up with Goldenhar Syndrome, what was some of the most significant challenges you encountered and how did you find the strength to overcome them?

- I have a couple different answers for this, but one is, which is a very common answer, is just learning how to deal with people's reactions to you.

- Right.

- And I had a couple of like really, really hard moments that triggered like a whole bunch of years' worth of not wanting to be seen in public or like trying to literally hide the left side of my face.

- Mm-hmm.

- Because that's what I considered to be the more different side. Then, another one of the harder things has been dealing with my face changing so many times.

- Mm-hmm.

- It's like I get used to the way my face looks and then I have another surgery that is ultimately, of course, for the better, like betterment of my health, or at this point, I'm just now at the point where I can, I'm getting surgeries to more even out my appearance as well.

- Right.

- But learning to love each face that has come into my life over the 20 years has been one of the more interesting challenges, let's say.

- Yeah.

- And one of the main things that has like helped with that, honestly is just taking time.

- Mm-hmm.

- It took a lot of time for me to really start to, like, listen when my mom and like... my other close family members would say that, look, you really are beautiful. And I would always brush it off like, "Oh, no, you're just saying that you're my parents, "come on, shush."

- Right, right, right.

- One thing that ended up really helping with that was I got really bored in 2020, you know, quarantine time.

- Mm-hmm.

- And I was on TikTok a little bit before that, but I started just posting a whole bunch of different, like, content regarding what it's like to live with a facial difference.

- Mm-hmm.

- And a lot of them were more funny, but some of them were really like expressing how it feels to look different. Even though I did, I have gotten quite a few like nasty comments over the same years, just sharing, sharing that part of myself really helped ground ground me in the sense that I, in the knowing that I am different and that's not a bad thing.

- Right.

- And different is beautiful.

- Exactly. And when you talk about, Lazer, about, you know, having surgeries in your face changing each time you have surgery, that's something that I've heard quite often from individuals in the craniofacial community, so I don't think you're alone in that. So you both have touched on it, but advocacy has become a significant part of both your lives. And so I'm wondering what motivated you to turn your personal experiences into a mission to support others in the craniofacial and rare disease communities?

- Well, I can say for me, naturally people started referring people to me because I had bushwhacked a path through the jungle with a machete, and they were like-

- Right.

- "Talk to this lady, figured it out." So I naturally was doing that and I was passionate about it. And even to the extent where I had some medical professionals referring people to me, 'cause I could say things they couldn't say. Like, in this previous state we lived, G-tube food, once a kid had a G-tube, the doctor was legally responsible for failure to thrive. I'm doing a little quote marks off the screen, and failure to thrive in Lazer's case was, they were putting formula through the G-tube that was a bunch of chemicals and that didn't, Lazer's body didn't like that.

- Right.

- It's kind of a simple matter. But the doctor had responsibility... Like, in other words, if you have a non-G-tube food kid, you can feed them, you know, Velveeta and Cheetos and, you know, gummy bears and nothing else and nobody gets in between you, not that you should.

- Right.

- But... if you take your kid off of the prescribed G-tube food, you can have your kid taken away in the state that I was living in, so it started at a very young age, 'cause this medical person from DSHS couldn't tell people, "to use goat milk... "or use the breast milk bank."

- You know, so she'd say-

- Right.

- "Talk to Amy." So, because that's how Lazer began thriving.

- Right.

- You know, just having natural food, so I worked out a special thing with the dietician to basically look the other way for a couple weeks. And if Lazer's weight went up, then we could, you know, have her look our way again. You know, these are the kinds of things, of course I would wanna help anybody that was, you know, right after me in the same shoes that I was in.

- Right.

- You know, and I think parents are just like that, or anybody that's gone through difficulty. You know, if you actually found your way through the woods, you wanna help somebody because you know what it was like and especially how long it took you, wouldn't it be nice if the next person didn't have to spend-

- Right.

- That much sweat or that much time, you know, with tough diagnoses? The longer something takes, the tighter the circumstances you might be in. So, we all, I love that about craniofacial parents and rare disease parents, and we're all ready to help, and that was my motivation.

- Yeah. And Lazer, do you have anything to add to that about your motivation and why you-

- Yeah. When I was younger, I had never met anyone with the same condition, Goldenhar Syndrome-

- Mm-hmm.

- Up until I was 12 and got invited-

- Okay.

- On that TLC show. And so I always grew up feeling very, very, very different and not really having anyone else who was in the kind of exact same boat.

- Mm-hmm.

- The other part is I have not seen a whole bunch of facial differences out in like the media, in the general media if it's not to like poke fun at them.

- Mmm, yeah.

- Or if, not like a villain in a movie, or something like that. And so a lot of my advocating just came from me... realizing like, "Oh wow, I'm not the only one here. "I'd also love to see more people like me." You know, just out in the world thriving, doing their life, and, I mean, that's what got me into it.

- Right. What kind of feedback have you gotten since sharing your story and appearing on TLC's "Two in a Million?" How has that, what has been the feedback? How has that changed you or impacted you?

- Honestly, just meeting someone for the first time with the same facial difference was like a godsend. Mm-hmm, yeah.

- And really made me realize that, oh, there are a lot of other people that also have this issue, it's just not that common, right? So it makes sense.

- Right.

- But my mom actually would probably have a better answer 'cause I don't really know exactly the changes that I went through.

- Okay.

- Right after, but I do know that a whole lot of people were just sharing about their own kids-

- Right.

- Seeing me on the TV show or, I had a lot of families trying to get in contact with me, and that was really, that was really lovely, and also at the time I got overwhelmed and then kind of like, which is, I don't really like that I did that, but I was 12.

- Yeah, I always say there's power in the shared story and knowing you're not alone and I just feel like what you just shared, that is so true. I mean, when you realize you're not the only one who has Goldenhar or been through experiences or had lots of surgeries, I think there's a comfort in that when you know you're not the only one, the day you realize that, so.

- You know, and that's the thing with craniofacial differences is that Lazer always looked different, and what people were responding because of that, and it is super isolating if there's nobody like you-

- Yeah.

- And you never met somebody like you, and that was the whole premise of the "Two in a Million" series, it was a whole series. What if you had a condition so rare that you had never met another person like you?

- Mm-hmm.

- So, and the series was like these two people who had this condition meeting for the first time, some of them were adults.

- Mm-hmm.

- So, I think, you know, what I noticed after the show also is you had been singled out. That's easy to do if you have a craniofacial condition, you were singled out, you were bullied because of that.

- Mmm.

- And at that time, more like when you were 11, you started like looking for where the bully was, like it was your first understanding that-

- Mm-hmm.

- 'Cause we, your school-

- Mmm.

- Everybody loved you, you knew the people well, you had sort of, you knew you were different, but you didn't have a sense that it could be dangerous to you. Then after you were bullied it was like, "Oh, where's the danger? "You know, where's the danger?" And, "Potentially anybody could dislike me." And then you did that really cool bullying video for Pacer with Austin on the show, and a lot of people were like, "Wow, you guys are courageous, that was awesome. "Tell me more," and then you kind of flipped. It was like, "Oh, there also could be a lot of people "out there that really appreciate me "because I'm articulate," and you were, it really made a big difference. And then, so that's what I noticed happening

- Right.

- It was a kind of a weird lightning bolt from heaven to be like invited onto a show, and then even it was, you know, international, so, you know, a girl in Norway with a pony was like, "I have Goldenhar and this is my pony, "you wanna come ride the pony," like it was... wildly, it was a wild experience.

- Right. So, Amy, you shared a little bit about Advocate Angel, but can you tell us why you started Advocate Angel and the work you're doing, you want to do, to navigate the complex medical maze, I know it is complex, and what inspired you to start Advocate Angel?

- Yeah, it's basically, you know, I always found that when I was super up against it and had no options and didn't know what I was gonna do and was about to lose it, an angel would jump out of the woodwork, and I mean, somebody in Walmart would go, "I got you, blah, blah, blah." Like, and you're like, "What?" You know, so when that happens, it is so profound and you, there's no way to pay it back, you just wanna pay it forward. So, I... I think our family went through something really different because we moved in order to get the best craniofacial care because even though eventually we got referred out of the small town we were in to the major city, then out of that particular office to the top office, the top craniofacial team was falling apart, we went and we got bad advice there, basically.

- Mmm.

- They wouldn't do any surgery for Lazer until Lazer was six, and Lazer couldn't, Lazer had a trach and other things, so Lazer was always a very articulate person in sign language, right? And I knew as a teacher that not, Lazer not being able to communicate directly with somebody by mouth, but needing to sign to me and have me sign to somebody else, that would really not be good for Lazer.

- Mm-hmm, right.

- So then we got another, we got another input that, "Yeah, "we've been doing these surgeries much younger than Lazer. "Absolutely Lazer can have a surgery "to advance the jaw and remove the trach." And that required us eventually moving states. So, how that plays into Advocate Angel is. I know how, like we have... pretty much like 40% better across the board experience with everything and being now exposed to other families that haven't known how to advocate, or haven't had the team that we got, or haven't had... certain blessings that we've had, we've seen the outcomes be really different. So I just, I'm pretty much on fire about it. There's two things that you need to make a good decision. You need enough information, and typically it's really hard to get good information on, oh that's funny. And you need heart and courage, and that means connecting to people in a community, and so I just thought if I could help families get good information and expand their heart and courage, that would mean the world to me.

- Yeah. And no doubt that this probably will help a lot of people, because I think you're right. I think when you have a child with a craniofacial difference and if you're not in a major city, it can be really hard to know how to navigate and you feel so alone in that, I think as a parent, you just feel like, "What do I do?" And I don't know about you, but I mean certainly my parents didn't have access to the internet and all these things, and Facebook.

- No.

- Or any of that, yeah, right?

- Didn't have that.

- We didn't even know about the Facebook support groups until I was 12, I think.

- Yeah.

- Literally, that lady from the show-

- Yeah.

- Was trying to contact me on Facebook.

- Oh wow.

- I didn't use Facebook, and plus, I thought this was somebody scamming, like they were gonna sell me a bunch-

- Right.

- Like, "We're the TV show with TLC." I'm like, "Yeah, right." So, they almost packed up the offer, like literally they were going, "Well, we're not gonna film this episode. "We didn't get the person, they never replied." And then, I dunno, somehow they reached me.

- Right.

- Yeah.

- So, to our audience, hope that you're enjoying this episode of "My Face, My Story." Whether it's your first time joining us or you've been with us since the beginning, make sure you're subscribed to our YouTube and Apple Podcast channel and sign up for our mailing list at myface.org/mystory. So, Amy, as a mother, how do you balance being an advocate with the emotional and physical demands of caring for Lazer and managing all her medical needs? And I mean, although Lazer you are now 20, so I'm gathering, you probably are able to now make a lot of your own decisions, right?

- Yeah, that's a lot more true. When I like reached 16, she was starting to go, "Now, here, you do this, I'll still do this. "Now you do this and this and I'll do this."

- Right, right.

- And over the years-

- Yeah.

- but now you, you get to do most of it.

- Yeah. That's-

- So that's what I'm happy for.

- Yeah. That's actually one of the real timing things of starting Advocate Angel, because I've always advocated, people have always sent people to me, but now, you know, Lazer is thriving and... driving their own three trailer semi. I mean it's not a small transfer all that stuff over, and so, I am in celebration of all of that and have more bandwidth to share with other families.

- Right. And... Amy, I think you are involved in also some research that's being done, if I'm correct.

- Yeah.

- Can you share about that?

- Yeah.

- Yeah, I've been involved with the CARE project, which is a study of craniofacial microstomia. It's a psychosocial study. So, we've interviewed, it's an NIH grant. Across five years we've interviewed caretakers, patients and medical professionals in a bunch of different ways about craniofacial microstomia. Rare conditions are very hard to study because amassing data, now that the internet is more impactful, it's easier, but amassing data used to mean that you'd have to fly people all to one city, and even finding all those people is hard with the rare conditions.

- Right.

- So, this is one of the first studies of craniofacial microstomia and it's, there's a, we've done a lot of published stuff about what the parents say are the hardest things and so that they can, we can take this information to providers and train them, you know? So, some of the first published stuff was about parents' comments that it's like drinking from a fire hose, there's so much going on.

- Right.

- And that's not something that, you know, providers have known. So, I'm involved with that research. I'm also involved with the EveryLife Foundation, RDLA, which is Rare Diseases Legislative Action.

- Okay.

- There's a lot of crossover from craniofacial to rare diseases. There are many craniofacial conditions that are rare, like where they are.

- Mm-hmm.

- So, RDLA pairs advocates with legislators to bring certain topics that are being considered in the legislature, to bring a personal voice to that. So, I just recently talked with my state representative and state senator about a piece of legislation that's going to allow Medicaid doctors to sign up for multiple states.

- Okay.

- That's really relevant because, and my personal story that adds good material for them so that they get why to do that is, I had the audacity to convince the top doctor for the surgery that Lazer got on their ear and hearing aid post, to get out of his exclusive contract at Cedar Sinai, get a license to practice medicine in Washington, and surgery privileges at Seattle Children's. And he agreed to fly himself out on his own dime and-

- Wow.

- Do the surgery with Lazer's doctor to train her. Who in their right mind would ask, like, like, I was shaking in my boots for a long time, but the, I did not see another way to do it.

- Right.

- And the point is, nobody should have to do that and he shouldn't have had to, bless his heart and soul forever-

- Right.

- Agree to be that gracious, and... I have a particular knack for stuff that another parent shouldn't even be expected to have. So, anyway-

- Right.

- So anyway, I was able to say all that to the legislators and RDLA coordinates efforts like that, that hopefully can give back to other families, again, in our circumstances.

- Yeah.

- That's great.

- Gotta get past, yeah.

- So Lazer, what advice would you give to other young people living with a craniofacial or rare condition who might be struggling with their own self-acceptance?

- It's a little hard to say 'cause I think it's different for everyone. And one thing I would definitely say is join one of the support groups that like My Face hosts or Faces, which is one of the foundations that was really helpful to my family.

- Mm-hmm.

- 'Cause they have a whole bunch of resources on connecting with others with facial differences, with your exact condition if you want that or, but that was one thing that I didn't necessarily have a whole lot of growing up, but the moment that I met another person like me that had the same experiences in a lot of areas, that opens the door in the sense of, oh wow, no, I'm not alone in having these experiences and just 'cause I am different, it's not a bad thing. And, you know, I think that's one of the best, the best resources you can make use of. As well as just talking, sharing yourself. Even when it's hardest to be who you are, that's when it's the most important to.

- Mmm, I like that.

- That's beautiful, yeah.

- And Amy, what advice do you have for parents who have just learned the child has a facial difference?

- Well, I think now that the, like for example, My Face wasn't out and about in the public sphere-

- Right.

- When Lazer was little. Yay, now My Face is there and I'm constantly referring people to My Face because there are just so many resources.

- Right. Thank you.

- There's like, the ACPA, the American Cleft Palate and Craniofacial Association, they have vetted the craniofacial teams, and you wanna get to a vetted craniofacial team, especially if you have a more, if your child has a more serious involvement, you really want the top-notch pre-established team that you can get. The other thing is social media is really great. There are a lot of Facebook groups. The only, I have a hack for that though, and it's an important one. I see families getting on the social media groups and, you know, you're gonna have, as a parent, the uncomfortable experience of taking advice from a doctor who's never been in your shoes, and you also are gonna have access to parents, and you have to understand that even though they've been in your shoes in some ways, they haven't been in your shoes because they don't your exact kid.

- And I-

- Yeah.

- I see people asking other parents like, "Should I get the... "whatever, Epibulbar dermoid surgery?" And it's like, well, you know, Lazer's Epibulbar dermoid is not obstructing vision, it's to the side of the eye and it's not very big. So if I answer that and I'm sort of like just answering from what I know, I say, "No, "don't get it."

- Right. Right. "Our doctor said no." But, like, if it's occluding the eye and it's getting in, whatever, it's-

- Blocking vision.

- Blocking vision, right?

- Right.

- Then you should, so you have to sort of draw on your community and draw on your doctors and-

- Right.

- Really be with the decisions thoroughly, you have to understand that nobody is in your shoes. It's kind of a lonely road.

- Right.

- And even with Advocate Angel, you know, I'm reaching a hand, I wanna help, and like, I do what is called a... tiny challenge, and that is like a few sessions where I'm just listening and learning about you, 'cause every person in this situation, maybe you're not in a rural area, you're in a city. Maybe you don't have a good craniofacial team near you, maybe you do.

- Right.

- Maybe your Medicaid doesn't pay for stuff that my Medicaid does, because every state is different. There are so many particularities. So, get with people that you trust that can help you. And to second what you said, the support groups, that's the other thing I'm referring people to all the time, you guys as support groups. Oh my goodness.

- Thank you. Thank you.

- Our therapy, are you kidding me? Like, just being able to be around community.

- Right.

- It's priceless.

- Yeah, I really believe that having that community is so important because-

- Yeah.

- Again, if you know you're not alone and somebody... You know, you have a three-year-old who's in a hospital so much, but you're talking to a mom of a 6-year-old who's further along on that journey and a mom who's 10 years old and 20 years old, and they can see the future because I think so many parents can't see the future.

- Right.

- For the child, you know, and I think-

- I even had, so I had a family that I helped that, the man, who's now a young man, with a craniofacial difference had his vocal cords damaged in the last surgery, couldn't express, was isolated during Covid and no longer is served by the pediatric craniofacial teams, so care was an issue, and the degree of isolation of that is terrible.

- Yeah.

- And it... It's a simple thing that I said was, "Join a support group and you can type in, "or make yourself understood," because on Zoom, you know, people were-

- Got that ability.

- And that, just that simple thing, made a huge difference, even with, you know, different medical problems remaining, and different, like, these problems don't just go away like that. They're, you know, a long, a lifelong thing that you may have another question when you're 34. Right?

- Right.

- And you don't know any 34 year olds, so... Anyway, just being able to connect him to a group, that was awesome.

- Yeah. Yeah. Can you talk about a mentor support network that has been crucial in your journey at this point?

- Yeah, holy cow, I have the best mentor ever, that's Lazer's godmother. And if I, myself, had not had strong arms outside of our nuclear family to catch us and if Lazer had not had those strong arms, I literally don't know where we would be. I think it would be, we would be in a much different place, and we were just talking about that yesterday, because the impact of the isolation, and it's like a pressure cooker, it's a kind of a pressure cooker. And sometimes parents, you know, any parent, just is not like, they didn't come in with the skills necessary for the challenge in front of them. Like that's like the, almost the definition of parenthood, right?

- Right.

- So, this mentor is Anahata Graceland, and she like changed my whole life by making so much available. And even though she hasn't had craniofacial differences, she has had different genetic difficulties in her life, so just being like, you know, "I've been there. "Listen, let me tell you this. "You gotta do the Oreo cookie approach. "You gotta do joy on the front end, "then the difficult thing in the middle, "and joy on the other side. "And since you know you've got these appointments coming up, "schedule it, schedule the zoo, schedule the appointment, "schedule the kayaking," or whatever.

- Right.

- To have somebody like that is, this is the other part of my inspiration of being an advocate. I am blessed beyond belief to have had that. So, there's nothing like that, I tell you.

- Yeah.

- Yeah.

- And Lazer, who do you think of as your greatest mentor and advocate, if you have one?

- I would honestly answer the same. My godmother, Anahata, has been a very wonderful close friend, and, like, I'm forgetting the word, of course, "avid," there we go, avid supporter and like being able to relate to a lot of situations, interestingly enough, even though our cases are very different. And also just being a support to... remind myself of who I am in the more challenging times.

- It is really important thing because, like when you have a lot of mental, medical... intrusion, I'm gonna call it.

- Right.

- Like, and you're trying to level up at your own skills and abilities to navigate because you know that, you know, from here you're gonna have a better outcome. You're sort of in a rabbit hole, and if you're too far down the rabbit hole and you forget your regular life and what makes you joyful and what gives you strength, you can get lost there, and that's one of the things, having a mentor and having a community brings, is like, you know, what did, you know, what do you do to enjoy?

- Right.

- Or just, just focusing, you know, after all, Goldenhar is just one sliver of life. It's a big sliver and an important sliver.

- Right.

- But, but... there's all kinds of big excellent life out there.

- Right.

- And part the balancing act is to just be in the larger excellence of life as much as possible and be really good at the stuff you need to do in the medical and-

- Right.

- System.

- Lazer, I don't know if you feel this way, but I always, when I go into schools and speaking to kids, I always think about like how my facial difference is just one small piece of who I am. That I am so much more than my facial difference. I don't know if you've had that, but I really have come to realize that, that I'm just, that that's just is, at times, it's been a big piece, but it, I think as we get older it becomes a, we are so much more than our facial difference.

- Mmm. Yeah, totally.

- Yeah. So, looking ahead, what are your hopes and dreams for the future in the craniofacial and rare disease communities and what change do you hope to see?

- One of my hopes is that I could come in and join more in with the craniofacial, like, groups that you guys have. 'Cause even though like I've done pretty well, over here, we don't really have in-person support.

- Right.

- Over on the West Coast as much as you guys know on the East Coast, and so I'm really excited to be coming to the races walk or-

- Races For Faces.

- Yay.

- Yeah.

- Yeah.

- So I'm really excited to come and meet a whole bunch of you guys and come closer in with my people, and one of the things I hope to see more in the future as a whole is, see just more of us craniofacially different people being really successful with whatever they're wanting to do. Seeing media, seeing like models, seeing actors. You know, the one craniofacial actor, or difference-having actor that I've seen is Gaten Matarazzo, right?

- Right.

- And I didn't even realize he had a facial difference at first until my mom pointed it out.

- Right.

- And I was like, "Oh my God, one of us!"

- Yeah.

- Yay.

- Right.

- And-

- Yeah.

- So, I hope to see more of that because that was such a big part of feeling alone was not seeing anyone.

- Right.

- So, community and... having more of us out there is like great.

- Yeah.

- I feel like we've got-

- And like this podcast.

- A lot of work to do, but we're doing it.

- Dina.

- Yes, what?

- Yeah.

- Like this podcast.

- Yeah! Right.

- I mean, I was so touched when I learned about this podcast and just started seeing different people sharing their experiences.

- Right.

- It's almost unspeakable, just seeing people, and having it be normalized part of life.

- Right.

- It's precious.

- Yeah, and it's also always really wonderful to see like what interests that... people have outside of their craniofacial difference as well.

- Right.

- So that's always a reminder to me too, that you are so much more than your difference, like you were saying earlier, and seeing, like, I watched... the one you did with Naomi and Aaliyah.

- Uh-huh.

- And just learning like what they're doing outside of having the craniofacial difference is like really wonderful.

- Mm-hmm.

- Thank you, so last two questions that I'd love to ask. So what would you each say to your younger self, knowing what you know now?

- You got this.

- I would say, it's gonna be okay.

- Mm-hmm.

- That's what I'd say.

- It's like when I say, "You got this," it's like keep the faith, because you can't really see what is ahead. The doctors are gonna portray certain things, and unfortunately, psychologically, they're like, "This limitation, that limitation."

- Right.

- "This... "abnormality-"

- Yeah.

- And this lack of function and that, you know, these difficult, you know?

- Right.

- You can't reduce a person to that, and it's actually, you have to know that they have to cast it that way so that they can apply their measures of remedy, but that does not define your child, or you-

- Right.

- Or whatever, so keeping the faith is knowing that you will know more than you do now, you'll get better at navigating than you are now.

- Mm-hmm.

- You will use the information to make a better outcome and you will change the outcome and... you can totally defy odds knowing that.

- Right.

- So that's what "keep the faith is," and stay connected with people.

- Mm-hmm.

- So who do you see when you look in the mirror today? You can say it in one word, one sentence, a thought.

- I see someone who is almost done with the major part of the surgery part of their life, and that's something that I'm really excited for. So every new surgery, right now for me, is leading up to like the quote unquote, "finally, "final surgery."

- Good.

- But I probably will need a couple more in the future sometime, I don't know when, but the main bulk of my surgery days are almost over, which I'm really excited about. I see someone who's... looking forward to what's ahead, because right now I don't know, but I'm exploring my options and that's really exciting.

- Love that. Love that. So, thank you, Amy and Lazer, for sharing your story.

- Thank you.

- I am so inspired by your advocacy, your passion, and how you have, Amy, advocated for Lazer, and Lazer, how you've advocated for yourself, and what you're both doing, and so I can't wait to see what the future holds for both of you, actually, and I really appreciate that you have shared so much because I know that you're gonna help so many individuals who might be struggling with their own self-esteem or just the overwhelmingness of this medical journey, so thank you to both of you.

- Thank you, Dina.

- Yeah, thank you very much for having us on.

- Thank you. So Amy and Lazer are inspirations to me and everyone they meet. Everyone has a story, and I'm hopeful that by sharing stories like these, we can create a kinder world. For more than 70 years, My Face has been dedicated to changing the faces and transforming the lives of children and adults with facial differences by providing access to holistic, comprehensive care, education, resources, and support that pave the way for better outcomes. To learn more, please visit myface.org. If you would like to learn more about the My Face support groups so that you can connect with others in the craniofacial community, please visit myface.org/online-groups. Be sure to subscribe to "My Face, My Story" on your favorite podcast app and on YouTube to get notified of our next episode. If you'd like to receive email reminders of new episodes, sign up at myface.org/mystory. That's myface.org/mystory. Thank you for joining us for this episode of "My Face, My Story." Remember, it takes courage to share your story, so be brave and speak out.