Advocacy - Be The Change: A Conversation with Melissa Tumblin

myFace, myStory

This month on the myFace, myStory podcast, Dina Zuckerberg welcomes Melissa Tumblin, a passionate advocate for the hard of hearing and deaf community. Melissa, the founder and Executive Director of Ear Community shares her remarkable journey—from navigating her child's microtia and atresia diagnosis to leading pioneering research efforts and advocating tirelessly for legislation like Ally’s Act.

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

- Hello and welcome to "myFace, myStory: "Voices from the Craniofacial Community." Whether you're watching on YouTube or listening on Apple Podcasts, quickly subscribe now so that you'll never miss a future episode. And if you're a fan of "myFace, myStory," rate and review the program on Apple Podcasts so we can get our message of inclusivity and empowerment to more people. I'm your host, Dina Zuckerberg, the Director of Family Programs at myFace. I was born with a cleft lip, a hearing loss, and no vision in my left eye. "myFace, myStory" is about people like us being seen and heard, about sharing stories within the craniofacial community and with others. Today, I will be joined by Melissa Tumblin. Melissa Tumblin is the founder and Executive Director of the Ear Community Organization and the Microtia and Atresia Support Group on Facebook serving the microtia and atresia community. She's an advocate for the deaf and hard-of-hearing community, and a hearing health activist, and assists on many boards and councils including the NIDCR, National Institutes for Dental and Craniofacial Research; the Friends of the CHHC, Congressional Hearing Health Caucus; and on the advisory board for a biotherapeutics company working on 3D printed regenerated ears. She has presented accredited presentations for audiology, educational organizations, and has also presented at many hearing-device-manufacturer meetings, microtia and atresia surgical conferences, and at the FDA. She launched the Microtia and Atresia Clinic at the Vanderbilt University Medical Center, and champions genetic research for the microtia and atresia community as a co-investigator on a whole genome sequencing genetic research grant with Harvard, Vanderbilt, and the MIT Ford Institute. Melissa wanted the children and adults in her community to have a special day, so she established National Microtia and Atresia Awareness Day taking place every November 9th. She's the recipient of the Family Leadership Award for EHDI Excellence, and the Oticon Medical Advisory Award, including the Legacy Award for helping the microtia community in South Africa. She has over 20 years of experience in marketing, medical devices, and electrosurgical equipment, and holds a Bachelor's Degree in Biology and Psychology from the University of Colorado Boulder. Welcome, Melissa. I really look forward to our conversation.

- Thank you, Dina.

- Yes. So can you share the personal journey with your daughter, Ally, and take us back to the day she was born and how you found out about her diagnosis?

- Of course. Well, first, Dina, thank you so much for having me on the podcast today. It's quite an honor. I appreciate everything you do. And there need to be more Dinas in our world.

- So thank you.

- Thank you.

- So as a parent, you know, we are very excited to start families and have children. And on the day that Ally was born, to our surprise, and I apologize if I get a little emotional, but, you know, I had quad screenings done. I went to all my ultrasounds. I did everything right as a mom carrying a child. And to our surprise, Ally was born missing her right ear. And as a mother, the first thing I did was blame myself. I thought, "Oh no, you know, did I really eat something "or drink something that I wasn't supposed to "that I maybe didn't know about, didn't show up on a label?" Because I was good. And in the delivery room, you know, I delivered Ally via C-section. My husband was the first to see her. And I just remember him coming over to me saying, "You know, there's something a little different "about her ear." And I didn't know what that meant. But when they brought Allie over to me, I saw her sweet, beautiful little smile and her beautiful face. And I was just so happy she was with us finally. And we were just definitely surprised during our delivery. And we did ask our doctors, you know, "Do you know why her ear's missing, or what happened?" And there was silence in the delivery room, which caused a little bit of concern for us. So we didn't understand what had happened. So that was our experience, even though we were so excited that she was here.

- So for those who may not know, can you explain what microtia and atresia is and then how rare is it?

- Absolutely, so first of all, this is my daughter Ally.

- Sweet.

- And as you can see, her right ear is missing. And she has a little crooked smile. She has slight craniofacial microsomia because the one jawbone is shorter on the other side. And when children have microtia and atresia, they're often missing ears. And so, when a child is born without an ear, the ear canal is typically missing as well. So that results in hearing loss. And here in the United States, it's a 1 out of every 6,000 births that this happens.

- Okay, so it's pretty rare.

- It's very rare. And it's rare enough to where it's not typically on most doctors' radar. So oftentimes, families deliver children, and this was our experience as well with the majority of our community. The doctors really just don't know what to tell you. And you feel, you know, a little lost. You know, when you're told something's rare, you think, "Gosh, are we the only family in our state, "you know, with a child like this?" Or, "What doctors can we go to?" And sometimes they just don't often have all the answers. You end up going through a lot of doctor's appointments trying to piece together the puzzle pieces.

- So how did this lead you to become an advocate for the hard-of-hearing and deaf community, particularly focusing on your experience with microtia and atresia?

- Yeah, so when I was marketing medical device equipment, I was a product manager. And I was over, you know, technical equipment in the OR. And so I learned how to be an advocate for the patient in the OR, and to also help the surgeon, you know, make sure everything was okay. And when I had my own children, I think I was surprised that there wasn't someone there to advocate for me. So this came out in me, and I quickly realized that if we didn't get the answers from our doctors, there must be many other families that are struggling along the way as well. And so, that led into me creating a support group on Facebook. And that support group's called the Microtia and Atresia Support Group. Until this day, it is the largest support group out there. And within a year, we already had 1,000 people join from all over the world. And what was crazy to me is that it was the same stories. It didn't matter if you were from the UK or Mexico or, you know, wherever, it was the same questions. Like, why did this happen? Did I do something during my pregnancy? Will my child be okay? Will they be picked on or bullied? And, you know, what's a BAHA? That's the specific type of hearing device that our community uses. And just all kinds of questions. And I couldn't believe it, that we know so much about the ear and hearing loss in today's world, that all these families have these questions.

- Yeah. And I was gonna say there really is that moment when you realize, "Oh, wait, I'm not the only one."

- Absolutely, absolutely.

- That there's whole community of people that feel the same way, that have the same questions. Yeah.

- And also, you know, when I started my support group, Dina, I had to think long and hard before I hit that button to create it that I'm going to put my child out there, you know, to try and help the community. And so I had a lot of thoughts go through my mind before I started that. And here we are today, a nonprofit organization and the popular community for these families to find. Because they all feel lost and alone.

- Mm-hmm.

- Yeah.

- So tell us about the Ear Community Organization that you started.

- Yeah, so Ear Community is a nonprofit that serves the microtia and atresia community specifically. And our organization started just after I started the support group, so around 2010. And I was encouraged by some of my now sponsors to create a nonprofit. It would be easier for them to work with me and help because we have events and, you know, we donate hearing devices and try to help those in need within the community. And yeah, I never thought I'd be running a nonprofit, but here we are.

- And you do it well from what I've seen. You're doing an amazing job.

- Thank you, thank you.

- And you have a small staff, right? It's just basically...

- Yeah, I'm pretty much a one-woman show, Dina.

- That's what I thought.

- And I do have one employee that helps me with our events. And yeah, we're very grassroots, but it's where it starts. You know, it's from the passion and in recognition of seeing what your community is lacking and what it needs. That's where it begins.

- I always say that. It's like, what does the community need and how do we fill that gap for them? Yeah.

- Absolutely. And you wouldn't know unless you're a parent or an individual that is experiencing the struggles along the way.

- I agree. So speaking of struggles, what are some of the biggest challenges faced by individuals with microtia and atresia? And how does your community support them? And you've touched a little bit on this, but...

- Right, yeah, of course. Thank you for asking. So, with Ear Community, our individuals have different struggles. And you know, they all kind of vary on different levels. So you can have individuals that are missing one or both ears. So some of them can still hear if they have a unilateral hearing loss. And then there are others where both ears are missing. They're completely deaf unless they have a hearing device on. When the ear canals are missing, you know, you have these challenges faced at the very beginning as a baby, when parents have to choose, you know, we're gonna use baby sign or try to adopt sign language and make sure that your child has another means of communication. But in addition to that, some of our individuals in the community also have craniofacial challenges. And so, that's craniofacial microsomia. A lot of times when you have unilateral microtia and atresia, the one side, the jawbone's slightly shorter than the other. That causes many, many tooth extractions for children along the way over the years. As they develop and get older and their bone structure develops and settles, many of them have TMJ, which is temporal mandibular joint syndrome: locking jaws, chewing problems because the teeth aren't aligned. And so this is a whole thing among our community. And most importantly, it's finding confidence within yourself and finding that, you know, self-acceptance and self-love if you don't have that right circle of friends. So there's a whole psychological component to our community as well. In addition to, these children and adults are perfect and beautiful in every way, as far as I see it. They can go on and they can go to college. They can start a business. They can become whatever they want to be in life. But as you know, society and the public can be cruel. And it's a lot of challenges along the way with just finding self-acceptance.

- Yeah, absolutely. So how do you approach collaboration with medical professionals, researchers, and other organizations to advance the cause of the deaf and hard-of-hearing community?

- Right. Well, specifically this began with microtia and atresia. The atresia part is the hearing loss part for our cause. But originally, you know, I started wanting to bring these families together. So I'd host events. And that's when, you know, the hearing device company saw, "Wow, this is amazing." And as I mentioned, so many of our family members, we feel lost and alone. These families didn't have a place to go. I mean, there are resources out there, but not everyone knows about all the resources. And not everyone specifically caters to certain causes. A lot of times, we have a combined community where we have a lot of individuals that make up the same dissimilar situation. But in our case, people started coming to the events. They found them incredibly priceless and walked away with a newfound self-confidence, a sense of belongingness. So basically, a whole community had been created through our events. And the individuals that attend know that they're in the same situation, the same boat as everyone there. And our events are a day for these children and adults where they're not stared at. Everybody's the same. And it's a place and an opportunity or time to fit in, and at the same time be educated, get all your questions answered. And so at our events, you know, we include fun for the kids. It's a magician, a face painter, a balloon artist, no matter how old you are. I absolutely see adults get tattoos, everything on their faces and enjoy. But we provide lunch. And we have, you know, anaplastologists that make prosthetic ears, and the hearing device companies. We have medical professionals that mingle. It's just a relaxed opportunity for events. And it was much needed. Because, as I mentioned before, these families will end up going through 10, 12 different doctor's appointments, Dina, trying to find the answers. And depending on who you go to, your second or third or fourth or fifth opinion, you know, that you get from the doctors, it can become incredibly overwhelming for these families. And just trying to figure out who do you go to, and what kind of help do you need at what time?

- Right.

- Yeah.

- That's why the community is so important, right?

- Community is everything, Dina.

- I agree, I agree.

- Oh my goodness.

- I think about it all the time, yeah.

- Yeah, I know you do.

- So could you explain what Ally's Act is, the significance of this legislation and your efforts to get this legislation passed? I know you're about to embark next week on it, right?

- Yeah, next week, the second week of May is basically our flight in week in DC. So we'll be traveling on, you know, Capitol Hill. And we have a bunch of meetings scheduled and we'll be advocating for our bill. But before I dive into Ally's Act, I just wanted to explain. When I created Ear Community, I wanted to make sure we talked about all options and that families were educated on every single option, not just some, you know, that might've been mentioned in an appointment or something that they just didn't even have a chance to be informed about. And so it's always been our organization's mission to offer everything. So in addition to the hearing devices, I've realized along with that for the past 14 years that I've been running Ear Community, I have watched family after family be denied these hearing devices.

- Yeah, it's a huge thing, right?

- Yeah, and while others are covered. So it's kind of a mess with private insurance. And sadly, it comes down to oftentimes the representative you have on the phone or, you know, how well the ENT or audiologist office is able to fight with your claim versus if they have to enter an appeal process or not. And so, you know, hearing is everything, Dina. It is a part of everybody's everyday life. It allows you to go on and be independent, have a life, have an income, thrive in your community. And to not have that available when technology does exist is awful. And what's even worse is when private insurers make the final decision over what your doctors say. And so during this month, it's the month of May, which is now National Speech-Language-Hearing Month, which used to be known as Better Hearing and Speech Month. So during the month of May, Ally, my daughter, for a homework assignment in third grade, she was asked to reach out to the community and see if they wanna, you know, participate in like meal drives, cleaning up trash alongside of, you know, the highway or in the neighborhoods, and/or write to a lawmaker about a cause that you care about. And so she wanted to write about our bone-anchored hearing device and how hard it is to get. And so that is how Ally's Act started. We wrote to our congressman, and he wanted to help Ally advocate to hear better. And so he wanted to honor her by naming this federal piece of legislation after her called Ally's Act. And when this bill passes, every state will benefit from the spill services for bone-anchored hearing devices and cochlear implants. And it's an amazing piece of legislation. It has everything in it that is needed. It provides the upgrade for the devices every five years, the accessories, the services behind it with an ENT and audiologist. And when you're ready to have the device implanted surgically, it will cover the cost of surgery as well as the postoperative care appointments and speech therapy. So it's everything that's needed. And it will help children and adults from birth to 64. But this bill's five years old now.

- Huge, huge.

- Yeah.

- Huge piece of legislation that needs to get passed.

- It does.

- So if people wanna get involved, how would they get involved?

- So we do have information on our website under the Ally's Act menu tab. But what is important to know is that people can write and they can ask their congressmen and their senators to please co-sponsor Ally'S Act. And then you put that session's bill number. So for example, this session which is every two years, this session's bill number for the House or Congress member is H.R. 2439. And for the Senate, it's S. 1135. And so these are the members that serve you over your zip code. These are not state level representatives. These are House. These are national lawmakers that are your representatives. You just write a letter; you speak from your heart. You can email them, you can call them. You say, "I have a family member that has this, "or is affected." You don't even have to have microtia and atresia. For example, with Ear Community's Ally's Act covering cochlear implants and bone-anchored hearing devices, this could help an individual who wakes up tomorrow and suddenly they've lost hearing in one ear. And sadly, a regular hearing aid is not gonna be strong enough or help them. You could have someone who was in an accident and had head trauma. There are viruses like meningitis, things that cause people to lose hearing. It can quickly deteriorate and show up when you least expect it. So these devices, BAHA and cochlear implants under Ally's Act, would help those individuals as well.

- To our audience, I hope that you're enjoying this episode of "myFace, myStory." 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 channels and sign up for our mailing list at myface.org/mystory. So Melissa, how do you, because I don't know how you do it as a one-person operation, but how do you balance your role as a mother, advocate, and a leader of the Ear Community?

- Yeah, so the whole work-life balance is a constant struggle, I think, for a lot of people. And I just luckily happen to have a lot of energy, Dina. And, you know, with my organization's passion and behind everything we're trying to do, I have an intense passion for helping our community, including my own daughter. And so together, I have learned to fight for her, to fight for others. And I just find a way to get it all done. It's not easy. It does take a lot of hours. I think most people, and you probably know this, Dina, anyone who runs a nonprofit, they're a different kind of individual. It requires a lot of, lot of work. And you're often doing it all on your own. And you may not have enough resources, you know, whether it's funding or staff. And you just do the best you can. And oftentimes, when there is an organization that has those individuals behind it with the very passion, those organizations are incredible. You know, they kinda speak for themselves with what they end up doing. Like for example, after having Ally and wondering if I had done something as a mother, you know, during my pregnancy, I didn't want another mother to ever blame herself, thinking that she must have done something during the pregnancy. And so I embarked with some researchers from MIT, Vanderbilt and Harvard. And yeah, we found new genetic information. And so it is hereditary, it's genetic. It's on chromosome 3 specifically for microtia and craniofacial microsoma. There is increased risk of this happening time after time, even when you have two parents that have a child where the parents are not affected but the child is. And I just wanted to make sure that mothers knew, you didn't do this. You know, depending on where these families are from, there's a lot of ethical and religious struggles that go behind what happens when a child's born. And a lot of these mothers end up struggling. They get the blame of the family, you know, and it's not their fault. It really is a genetic issue. And so we have new information. And our organizations publish those papers. So this is part of that passion that I'm talking about is we can't always wait for things to happen. And sometimes, you do things a certain way that nobody else would do but you. And so it's very important with these organizations that the individuals running them and behind them, it's the true cause that they understand.

- I remember, it reminds me of when I joined myFace 10 years ago and I said, "I never wanted any child "to go through what I did growing up." And that's why I wanted to do the work that I'm now doing. So, yeah.

- And your work's incredible, Dina. Like I said, we need more Dinas in this world. Because not everyone is going to be brave enough, you know, like you, and have that passion and drive to really want to make that difference. And to put yourself out there, it can be very frightening. You know, I don't know about you. I've talked with other, you know, organizations. And there's trolls. There's people out there that they're just not very nice and they just like to try to ruin a good thing. So thank you for what you do, Dina.

- Thank you, and likewise. You're doing amazing stuff too for this community. So thank you. So what advice do you have for parents who've just learned that their child has microtia and atresia?

- Right, so when a child is born with microtia and atresia and the family is getting used to their new baby, they're tired and they're scared all at the same time, please know that everything is gonna be okay. Chances are, in the next like six months after or following the birth, that family will be doing their research. And sometimes, they can become the expert on what their child has even over going to see the doctors. Because they will have sifted through information in and out. And they will know exactly, they'll find good information on our website. And it's honestly a wealth of information that is needed. And to just know the steps. You may not be told who to go to at first or what to do. But once you have a child with microtia and atresia, they'll be screened for hearing. The doctors may wanna check their heart and their kidneys. Because the ears, the heart, and kidneys all develop during the same first trimester.

- How interesting.

- So if there is an issue with one or any of 'em, they're gonna... They should check all three. And then from there, you'll be referred to the right helpful resources, including audiology and ENT. And most importantly, you know, find those organizations that offer what you need, that help that specific community. Because it can be very frightening. And families always worry. Mothers will always worry the most along with the fathers about their children. We just don't want anyone to hurt our beautiful children, pick on them or bully them. And at the same time, they have a lot of medical needs. And it can be very scary, but everything will be okay. It's normal to feel overwhelmed at first. It's normal to feel guilty, even though I hope they don't. And you just have to go through the time process of letting it all sink in. And finding someone else in the community in the same situation is priceless. It is amazing to find another parent with the same child. It's amazing. It's hard to have that same kind of conversation with a doctor no matter how wonderful and amazing they are and how knowledgeable. To have someone in that same boat is amazing. The first time I saw a little girl was when I was looking at preschools for Ally at one point. And I had already been having my events and everything. But this little girl came into the preschool classroom, bilateral microtia and atresia. She had her bone-anchored hearing device on. And she came up to me and said, "Hi, my name is Illy," signing at the same time. And she was all excited. And she said, "Today's my birthday." Dina, for me to see that little girl was what I needed. Even though, you know, I had been bringing people together, there are those moments where you have a conversation with someone and you run into someone at the grocery store or the swimming pool, and they're the same as you, and it's just truly amazing. And I will always remember that day.

- I love that story.

- Yeah, well that is how important it is to have community.

- Absolutely. I always say, there's power in the shared story and knowing you're not alone. And I think about that all the time 'cause I think it's so true.

- It is. Well, you realize your child's gonna be okay and you're gonna be okay. And maybe things aren't going to be as bad as you thought because it showed you hope. And hope goes a long way.

- Right, absolutely.

- Well, and also for the community for these new families too, it's to know that their children will grow up to be just fine. They're gonna be able to go on and do whatever they want in life. They can go to school or, you know, become a doctor, a teacher, a musician. It's gonna be okay. It's just, they can't see into the future. And that can be terrifying.

- So true. One of the things we do is support groups for parents. And sometimes, you'll have a parent with a 1-year-old and a 3-year-old and a 10-year-old and a 20-year-old. And the mom with the 3-year-old can't see into the future. But the mom with the 20-year-old can say, "It's gonna be okay. "Your child's gonna be okay." And that is such a comfort for those younger parents who just, they can't see it. You know, and it's understandable why they can't see it. But just to have that kind of support is priceless. Like you said, it's priceless.

- Well, and to have those communities, like I said, combined communities or blended communities where a lot overlaps, when you have older individuals to talk to where you can kind of see how they're doing, it's something that it's twofold. It helps that younger family, but at the same time, it gives that older individual the opportunity, whether they're a teenager or an adult, to be a role model, Dina. And that's where it starts, with people willing to share their experiences and meet with others or talk. And it's so important because, again, you cannot get this in a doctor's appointment.

- Exactly, exactly. So I have so many different questions to ask, but I think we need to wrap it up soon. But one of the things, because it is something that really bothers me, what are some of, you think, the misconceptions people have about people who have microtia and atresia and could be deaf or hard of hearing? And how can we work to dispel them if we can?

- Right, so there are labels in our world. Some can be good and helpful, and some can just have a negative tie to them. And the word disability can be devastating to someone because many people defy disabilities. In the microtia and atresia community, we always say, "We never let little ears or missing ears define us, "and the same with hearing loss." So as I mentioned, sadly, with the public, the public can be cruel. There's this whole idea of, you know, perfection and things on magazine covers and things that really aren't real oftentimes to begin with. But when you have someone who has microtia and atresia, A, they feel alone because they oftentimes will not see someone or find someone just like them. And so they feel different. And different can be a strong word too. It's all really about fitting in and self-acceptance. But, you know, with these individuals in our community, you really just have to find your path. And that takes time. You have to find a great circle of friends, someone who's there to support you. Many of our families offer a safe haven at home for them to go to. But, you know, they really need to just realize they're perfect just the way they are. And that can be hard to accept that. People on the outside may view individuals with microtia as, "Oh look, their ear's missing. "I wonder why." Or, "They have a crooked smile." Or, "What's that device on their head?" You know, like the hearing device. And a lot of these things can attract attention. It can raise questions, whether it's curiosity or, unfortunately, if you encounter someone rude. But it's something that you just have to, sadly, go through, hope for the best, and find your inner strength and how to respond, how to come up with a good explanation or response when these questions start being asked. So parents end up just kinda learning along the way. And then they end up coaching their children, "So this is just how I was born." And honestly, the bottom line is everyone has something going on, Dina. Nobody is symmetrically perfect. No one's perfect to begin with at all. But whatever challenge or difference you may have, it's even better if you can just own it. You know, embrace it and find your way of fitting in, whether it means covering your ear. We don't promote that. We want you to just be proud of yourself, wear your hair up, have that short haircut. But if you want a shaggy haircut to cover the part of your ear, whatever helps you get through that day at school to where you can find happiness, or if you want a surgical procedure done. All of this, if you wanna just accept yourself the way you are, it's all great. You just have to find your way and be strong. And then, like I said, going back to community, there are people you can lean on knowing that you're not alone.

- And it's taken me a lot of years to get to the point where I'm comfortable talking about it and sharing it. But I realize how important that is, and also to, to come to the realization that it's not all of me, it's just a piece of me, that I'm so much more than my hearing loss and my cleft lip or any of that. But I think it's important. And, again, that community helps that so much. I mean, I didn't have that community when I was a child. And to see what's happening now, it makes my heart sing. It make me so happy to know that this is out there.

- Well, times change. Yeah, times change. And thank God, like you said, today, there are more available resources. We have the internet. You know, there's so many more things. But, you know, everyone's different, Dina, even uniquely and individually. You're going to have individuals in both overlapping communities, no matter what their challenge is. Some have this amazing confidence about themselves. They're doing great. They may even pass on a lot of options that could help them live better quality lives, or they seem to be doing fine. And then there are others. I don't know if it's genetically predisposed, but they struggle. They struggle with accepting themselves, worrying, a lot of stress and anxiety, depression. And again, it goes back to that circle of friends. Who do you have? If you have nobody, unless you're that strong individual, it's gonna be different for each and every child and adult.

- And I always say, it takes one. All you need is one friend. If you just have that one friend in your life, one advocate, one supporter.

- Absolutely. If you don't mind, I wanted to share something just real quick. So a lot of people, you know, have asked me, like, you know, "How did this start, Melissa? "Like, how did you figure out how to like help "and reach out to this community?" And sometimes you realize, you know, maybe this is a calling or, you know, maybe someone was looking out for me. But I have lived in my neighborhood for 20 years, Dina. And here in Colorado, the very neighborhood that I live in falls within the best school district in the state that offers the best deaf and hard-of-hearing services.

- Wow.

- I had already been here well before Ally was born, never realizing that someday I'd have a child with hearing loss that would benefit. We actually have families that move in from other states to move into our neighborhood within the school district with deaf and hard-of-hearing children. And the crazy thing is, is in addition to that, at my daughter's elementary school, she at one point in time, there were 11 children in her very elementary school that had microtia and atresia. In fact, there were three children including my daughter in the same grade, three little girls all missing the same ear, wearing the same hearing device. And they all had each other. Now call that living in a crazy bubble. But most people, I've met many adults, 35, 45, 65, and they'll say, "I've never met someone like me." And to have lived here before all of this started with Ally. I've had people point this out to me where at the time I didn't even realize it. But yeah, looking back now, I realize I think someone was looking out for my child and this was meant to be.

- Yeah, I was just gonna say, because I say it about myself. Like maybe this is exactly where this journey has led me to exactly where I need to be, doing exactly what I'm doing. And if I didn't have the experience that I had when I was born and growing up, maybe I wouldn't be doing this. And I love, and I'm really passionate about what I do. And I feel like in talking to you, maybe this is exactly where you were meant to be. And, you know, you don't always wish these things on people, but you wouldn't be doing the work you're doing if not for the experience of having Ally. So this is my last question to you. What are your hopes and dreams for Ally, your daughter?

- So for Ally, Ally has some additional challenges in addition to her microtia and atresia and her craniofacial microsomia. She's got a little extra going on. My hopes and dreams for Ally are for her to live the happiest life possible. She, quite honestly, is the happiest little girl I know. And I hope that with what I do with Ear Community, that over the years she has seen that it's all okay. You know, there's a lot of people out there just like me. I don't ever want her to feel different or not like something about herself. And I hope that she will have this confidence. She has her moments of confidence. And, you know, I want for her to be able to fit into society. And I don't ever want her to feel or be discriminated against. And I just want her to have the best life that I can help her find. And so, through our organization together, she's the face of Ear Community as you are for myFace. And I just hope that she will always have that with her and always know who she is, and that it's okay.

- Well, with a mom like you, I have no doubt that she will have that in all that you're doing. So I thank you for that.

- Thank you.

- And I wanna, Melissa, thank you for sharing your journey with us. And you have accomplished so much advocating for your daughter and for others. And you hear, never underestimate the power of one. And this is so true. And I see how passionate you are and how tirelessly you work for the community you serve. So no doubt, you will continue to change the world for the better. So thank you.

- Aw, thank you, Dina. Thank you for all that you do as well.

- Thank you.

- Where would people be without organizations like ours?

- Mm-hmm, absolutely.

- Somebody has to start it somewhere, and it's amazing. I wished I had an Ear Community when Ally was born.

- I feel the same way. I wish I had a community like myFace when I was born. So yeah. But here we are, and always moving in the right direction. So thank you.

- Absolutely.

- Melissa is an inspiration to me and everyone she meets. 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, myFace 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 myFace Support Groups so that you can connect with others in the craniofacial community, please visit myface.org/online-groups. Be sure to subscribe to "myFace, myStory" 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 "myFace, myStory." Remember, it takes courage to share your story, so be brave and speak out.

- Hi, I'm Stephanie Paul, the Executive Director of myFace. MyFace is a nonprofit organization dedicated to changing the faces and transforming the lives of children and adults with facial differences. We do this through various programs and events such as the Transforming Lives Educational Webinar series, Races for Faces, the Wonder Project, and the groundbreaking myFace, myStory Conversational Series. You can learn more about all of these on our website at myface.org. If you enjoyed today's program, we hope you'll consider making a donation to help keep programs like this possible as well as to further the support of the craniofacial community. Thank you.