Heart to Heart with Anna

Battling Congenital Heart Defects: The Extraordinary Stories of Emily Falcon and Mabel's Friendship, Advocacy, and Resilience

November 07, 2023 Emily Falcon Season 18 Episode 429
Battling Congenital Heart Defects: The Extraordinary Stories of Emily Falcon and Mabel's Friendship, Advocacy, and Resilience
Heart to Heart with Anna
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Heart to Heart with Anna
Battling Congenital Heart Defects: The Extraordinary Stories of Emily Falcon and Mabel's Friendship, Advocacy, and Resilience
Nov 07, 2023 Season 18 Episode 429
Emily Falcon

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How does a young child learn to fight, to survive, and even thrive when they're born battling a congenital heart defect? Join us as we journey through the inspiring life stories of Emily Falcon and Mabel, two extraordinary women who refused to let their heart conditions define them. Emily, born with the rare ALCAPA--Anomalous Origin of the Left Coronary Artery arising from the Pulmonary Artery, takes us through her harrowing experiences with two open-heart surgeries, and how these experiences have shaped her into the woman she is today. 

Have you ever wondered how the body adapts itself to survive a chronic illness? Emily provides a firsthand account of her body's fight for survival, and the challenges she faced, leading to her penning down a memoir about living with chronic illness. Listen to her describe the difficulties she faced in expressing her emotions, the support she found in her friendship with Mabel, and their collective efforts to raise awareness of those with congenital heart defects. 

Discover the depth of Emily and Mabel's friendship, born out of shared experiences and a summer camp for children with congenital heart defects. Hear them discuss the power of being your own advocate, the strength they found in their enduring friendship, and the importance of resources like Emily's book for others going through similar experiences. Through special memories, advice for others, and a best friend's forever necklace, Emily and Mabel exemplify the extraordinary strength of the human spirit in their battle with congenital heart defects. Join us as they share their inspiring stories, and remind us that it is not our challenges that define us, but how we respond to them.

Link to Emily's Book: https://www.babyheartspress.com/emily-falcon

& so much more
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How does a young child learn to fight, to survive, and even thrive when they're born battling a congenital heart defect? Join us as we journey through the inspiring life stories of Emily Falcon and Mabel, two extraordinary women who refused to let their heart conditions define them. Emily, born with the rare ALCAPA--Anomalous Origin of the Left Coronary Artery arising from the Pulmonary Artery, takes us through her harrowing experiences with two open-heart surgeries, and how these experiences have shaped her into the woman she is today. 

Have you ever wondered how the body adapts itself to survive a chronic illness? Emily provides a firsthand account of her body's fight for survival, and the challenges she faced, leading to her penning down a memoir about living with chronic illness. Listen to her describe the difficulties she faced in expressing her emotions, the support she found in her friendship with Mabel, and their collective efforts to raise awareness of those with congenital heart defects. 

Discover the depth of Emily and Mabel's friendship, born out of shared experiences and a summer camp for children with congenital heart defects. Hear them discuss the power of being your own advocate, the strength they found in their enduring friendship, and the importance of resources like Emily's book for others going through similar experiences. Through special memories, advice for others, and a best friend's forever necklace, Emily and Mabel exemplify the extraordinary strength of the human spirit in their battle with congenital heart defects. Join us as they share their inspiring stories, and remind us that it is not our challenges that define us, but how we respond to them.

Link to Emily's Book: https://www.babyheartspress.com/emily-falcon

& so much more
A bi-monthly podcast where we share the stories of our Caregivers, patients and...

Listen on: Apple Podcasts   Spotify

Support the Show.

Anna's Buzzsprout Affiliate Link

Baby Blue Sound Collective

Social Media Pages:

Apple Podcasts
Facebook
Instagram
MeWe
Twitter
YouTube
Website

Anna Jaworski:

What was it like to grow up with a congelato heart defect in the 1980s and the 1990s? How did children with congelato heart defects find one another before Facebook and Instagram? What kind of relationship could be forged by attending a special summer camp for children with congenital heart defects? Welcome to Heart to Heart with Anna. I am Anna Jorski and your host. I am also a heart mom to an adult who was born with a single ventricle heart and who was born in 1994. This is the reason I am the host of your program.

Anna Jaworski:

Today's guests are Emily Falcon and Mabel. With me today are two very special ladies. Emily Falcon was born in 1982 and at seven weeks of age, she had a heart attack that destroyed 40% of the left side of her heart. She was born with a condition known as ALCAPA-- anomalous origin of the left coronary artery from the pulmonary artery. Emily has had two open heart surgeries, one at age six and another at age 35. The second surgery provided Emily with the quality of life she never could have dreamed of.

Anna Jaworski:

Emily has written a memoir about her experiences of growing up with a congenital heart defect and other medical conditions that prevented her from having the quality of life she did dream of In her memoir, from the sidelines to the finish line, she shares how her condition made her feel different, but how she persevered and how her last surgery totally changed her life. Throughout her memoir were introduced to Mabel, Emily's best friend. Mabel was also born with a congenital heart condition. She was born with transposition of the great vessels and has also had open heart surgery. Mabel also developed six sinus syndrome and required a pacemaker. Mabel and Emily met at a summer camp for children with congenital heart defects and struck up a friendship that has lasted for decades. Today, Emily and Mabel are here to talk about growing up with a congenital heart defect, how their friendship has blossomed, and we'll also talk about Emily's upcoming book.

Anna Jaworski:

I'll talk with Emily in the first segment and then with Mabel in the second and then the third segment. We'll all be together in the studio. So welcome to Heart to Heart with Anna. Emily, Thank you so much for having me. Ina, I'm so excited to talk to you about your book and to me, Mabel, I'm super excited about that. Let's talk about first of all what your heart condition is, because I think it's a fairly rare condition and I don't think many people know about it. Sure.

Speaker 2:

Alcafua occurs one in every 300,000 birds, so yes, it's very rare and it means the left coronary artery arises abnormally from the pulmonary artery and after the heart attack I had as a baby, it damaged my mitral valve so that it regurgitated blood instead of circulating it. Wow, that's a lot to take in.

Anna Jaworski:

When I first learned about your condition, I reached out to one of my medical advisory board members because I didn't really know much about Alcafua, so I asked him if he would explain it a little bit better to me, and he said that Alcafua refers to a condition where the left coronary artery originates from the pulmonary artery instead of from the aortic.

Anna Jaworski:

As the pressure in the pulmonary artery fails in the weeks after birth, as the lungs fully expand, there's not enough pressure to propel the blood into the left coronary artery to perfuse the heart muscle, resulting in a heart attack. The left ventral coel can be significantly damaged. Although blood from the right coronary artery can cross over to the left via the blood from the right coronary artery can cross over to the left via collaterals and a lot of you have heard about collaterals because it's not specific to alkape. Other heart conditions can also cause the development of collateral vessels being created in the heart. This does protect the heart to a degree and typically this occurs around a month or two of age. Surgery can be done to reattach the left coronary artery to the aorta, restoring normal blood flow, but I think that is something that can be done now and maybe was not as commonly done when you were born.

Speaker 2:

Emily, yes, that's correct. They bypassed it and tied it off, and he instead.

Anna Jaworski:

Wow, so you're a living legend in some ways, aren't you?

Speaker 2:

Yes, that's the embarrassing to say, but I think so in the medical world Hi there.

Anna Jaworski:

You feel far too young, I'm sure, to be a living legend, but I think it's really cool that you not only have survived this that is amazing but also that you're willing and able to talk about it, because now there are more and more adult survivors of some of these unusual conditions, even though they weren't able to take care of that condition way back when, like they can do it now. It seems like a more definitive fix now than what they were able to do back then.

Speaker 2:

Yes, they weren't very sure what to do with me at all and many doctors consulted with other hospitals to try to figure out, and there were all different opinions because no one had really survived before me so there were no examples to look up. But my doctors decided, since I needed that ring, that they should wait to do the surgery until I grew, because they didn't want to have to replace it if I grew too large. So the longer we could wait the better. And I did have those collateral arteries, which is why I survived the heart attack.

Anna Jaworski:

Wonderful, but it's so good to know that you understand that well enough that you can actually explain it and that helps other people to understand as well. I know I have a friend who was born with hypoplastic right heart syndrome and that child also developed collateral vessels that helped him to live long enough to get the surgery he needed. So it's amazing to me how the body can compensate for some of the problems that it has in order to allow you to live to six years of age. I can't believe you were six before you had your first surgery. That's amazing.

Speaker 2:

Yes, I was in congestive heart failure and it wasn't smooth sailing. So I don't want to paint the wrong picture, but they didn't have to do anything until then, even though it was considered many other times. You know what?

Anna Jaworski:

that's a really good point because, yes, you were in congestive heart failure and you're right, it wasn't smooth sailing. One of the things as a heart mom I worried about with my youngster once the heart defect was diagnosed was, oh my goodness, what if my child gets a bad cold? Because for heart warriors sometimes a bad cold can turn into pneumonia and stay in the hospital. It can even be life-threatening. So you're right, those years before you have a surgery that prepares your heart to function better, it's pretty scary.

Speaker 2:

Yes, I didn't get pneumonia actually until after my first surgery. But I didn't go out much as a child because of the germs. I couldn't have much salt because of the heart failure. I obviously did not play sports or do anything very active ever until the second surgery. But especially as a child and before the surgery, I napped quite often. I don't even think I cried very much, except for the day I had the heart attack because that was too much energy and that was how my mom knew something was wrong, because I actually cried for the first time for a long time?

Anna Jaworski:

Oh, wow, wow. So why did you decide to write a memoir about your experience, emily?

Speaker 2:

I wrote from the sidelines to the finish line about living with chronic illness because I wanted to spread the word that anyone, despite their challenges, can try anything with modifications and if you feel up to something, you should take advantage of your health and don't let opportunities pass you by. Mabel and I didn't have books like this when we were younger to read about people with similar illness. I read books about children with cancer to try to relate to somebody. The Baby Sitters Club had a character with diabetes but she only mentioned when she was in crisis.

Speaker 2:

There wasn't really non-contastrophe books. So I just wanted to show really the day-to-day life of a non-contastrophe chronic illness and that things can change and will always be up and down, and recently Mabel mentioned to me that she has a friend of a friend in the early 20s who didn't know any of her warriors. Like herself, she felt alone and I feel like she could benefit from a book like this and it's important that, even though we all have different experiences, we are part of the same community and can provide comfort to those who are going through challenges.

Anna Jaworski:

Absolutely, absolutely. What was the hardest part about telling your story?

Speaker 2:

It was very challenging for me to write about my emotions. I can write about them in a disconnected way without really expressing many feelings. But all of my early readers wanted more from me and since I've experienced AFib as an adult, I found it's triggered by emotions happy, sad, anger. Anything can do it, washing my hair. So I got shut that feeling off of excitement or happiness. I was worried that writing might trigger it. I really had to push myself to feel those feelings again in order to do it, so that was the hardest thing.

Anna Jaworski:

And Tonight Forever by the Baby Blue Sound Collective. I think what I love so much about this CD is that some of the songs were inspired by the patients.

Speaker 3:

Many listeners will understand many of the different songs and what they've been inspired by. Our new album will be available on iTunes, Amazoncom, Spotify.

Anna Jaworski:

I love the fact that the proceeds from this CD are actually going to help those with congenital heart effects.

Speaker 3:

Enjoy the music.

Anna Jaworski:

And Tonight Forever. This content is not intended to be a substitute for professional medical advice, diagnosis or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe, but of the hosts and guests, and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

Speaker 5:

You are listening to Heart to Heart with Anna. If you have a question or comment that you would like to address on our show, please send an email to annajewarski at anna at hearttoheartwithannacom. That's Anna at hearttoheartwithannacom. Now back to Heart to Heart with Anna.

Anna Jaworski:

Welcome to Heart to Heart with Anna Mabel.

Speaker 4:

Thank you, very excited to be here.

Anna Jaworski:

I'm so excited to talk to you because I didn't say in the opening that Baby Hearts Press is actually the imprint for Emily's book, and so I have been helping her through her publishing process and it has been so exciting for me to read her book, to see it grow and change, and I feel like I know you, mabel, even though I don't, so today I'm going to get a chance to know you a lot better. This is going to be so much fun. Let's have you start by sharing what it was like to go to summer camp for the first time, and I want to know did you meet Emily at your very first summer camp?

Speaker 4:

I did. I started going at age seven and I think I met Emily a few years later. That was the first camp. I was young, that was the first camp, but it was a real community, as I always said before.

Speaker 4:

It was really a place where they encourage you to do all the things that can do, but with a different set of camaraderie, without some of the competition that you see in other schools it was able to participate without feeling that you couldn't keep up, and to me that really gave all the kids there the ability to really participate, to really feel that they were going to be embarrassed if they couldn't do something another kid could do. This was really important to have that camaraderie between the other campers, and it was a small camp as well, which I think was beneficial. All the kids would get meds after dinner. It wasn't weird to have to go to the nursing at your medicine All the kids were going to get medicine.

Anna Jaworski:

And this camp was specifically for kids with heart defects right, yeah, it was. So did everybody have similar scars.

Speaker 4:

Yeah, a lot of zippers. Everyone had a zipper so it felt it was just common to see. It wasn't strange to see Nobody asked, nobody looked, if you compare it, because you wanted to, not because you felt that somebody was questioning. What's that from? And it was more comfortable to share your story. You wouldn't get a story back. It was more of a two-way street than a one-way street. Are you having to be the only one explaining what happened to you?

Anna Jaworski:

Yeah, and I imagine as a seven-year-old, perhaps in school kids would notice your scar and maybe talk to you about it, and talking to those children was probably a very different experience than talking to some of the other campers 100%, very different, coming from a different place.

Speaker 4:

Even as kids are curious, they ask questions. I don't think children ever mean it in trying to make you feel bad, but you can't help but think that it has been furrowed training you Because it is, in a way, so when you're talking to another kid who has an experience they can share back. It's a very different experience and it bond view in a different way.

Anna Jaworski:

Yeah, I'm wondering when you meet somebody at camp because I never went to camp as a kid, I've never been to a summer camp Is it the kind of thing where you meet up and maybe you ask each other or you notice each other's scars and you talk about it and then after that are you just a kid, or is it something that you revisit over and over?

Speaker 4:

Yeah, I think for me, Emily and I would have been friends no matter what. We had things in common. Right, we just got along. We're not friends because we have congenital heart defects. We're friends because we're similar people, but the congenital heart defect is a deeper level of understanding and connection and you rely on each other in a different way. So it's just a deepening of a deep friendship, basically.

Anna Jaworski:

I love that. I love that. So what did you think when Emily said she wanted to write a memoir?

Speaker 4:

I was very surprised, as Emily said before. A lot of things internally, and of course, I know a lot about Emily and we share but the thought of her wanting to go out and really spread her feelings and what her experience was surprising, but in a great way, because she has been through a lot and she's conquered a lot and I think for her to be able to put that out there it's good for her too and I think it's good for everyone who's going to really hear her story and be inspired by it, be comforted by it. Emily is always very honest and I think the book is very honest as well. So have you read it? I did.

Speaker 4:

I read it and I learned a lot about where I think that everyone has things inside them that they keep it internally, and so, as close as you are to somebody, you can always learn something. You can always learn what it felt like for somebody in a different way, and so I think hearing it was helpful to me too to relate to my own experiences and maybe look at something with a different lens or a different perspective. Yeah, even if it's not exactly the same experience, it's still something that is relatable to me.

Anna Jaworski:

Has this made you contemplate writing your own memoir?

Speaker 4:

I think Emily was really determined. We used to write as kids and it's fun, I enjoy it, but Emily really buckled down and really you have to really have the willpower to sit and do it. It takes a lot of effort, it takes a lot of time and I think I have an interesting story, but I don't know if I have the dedication. Emily has to really really be able to put that on paper and really feel like it really matters to her to feel that she's connecting with people and doing something important for people, and I think that's probably driving force.

Speaker 4:

It's knowing what an impact it has. It's going to have Absolutely.

Anna Jaworski:

So you said you learned some new things about Emily. I think one of the things that bears telling is that, even though you girls became best friends at summer camp, you all did not live close to each other. You didn't go to the same school, you didn't see each other every weekend.

Speaker 4:

No, we were of AOL era. We were signed on AOL to have instant message chats where you get on the on top for all hours. But we were far apart, and so we had to find ways to connect as best that we could. We didn't have cell phones.

Speaker 3:

We didn't have. Wi-fi.

Speaker 4:

I think we would send letters to each other in the mail too. Cut out magazine stickers different time.

Anna Jaworski:

It was a different time. I still have an AOL address, being a lot of people actually do. I love that. I love it. I think it's fascinating the way you girls, even though you didn't live in the same state, you weren't near each other After summer camp, you were like now we still need to keep in touch with each other and you wrote good old fashioned snail mail to each other, as well as connecting on the internet, which was really new way. Back then, when AOL was young, it was really new. In fact, it's funny that she said what you did about the chat when my kid was two, so this was still in the late 1990s. That's the first time I got online and it was dial up. You girls remember dial up.

Speaker 4:

Yeah.

Anna Jaworski:

And you would be so excited when it would make the final connection and you knew that you could talk to somebody. And we used to have a Friday night chat that was just for HLHS parents, and so while a lot of my friends were off because I live in Texas, a lot of them were off watching football games at the local high school I was sitting at my computer talking to friends around the world about their kids with hypoplasic left heart syndrome. So were you in a chat with other people or were you in a private chat with just the two of you, just each other?

Speaker 4:

We did in. I don't recall ever meeting anyone else through the internet that way. Also, I don't recall ever looking up information about anything the way people, I think, can look up information. Now I think it's good, but I think meeting people, whether it's in a chat or in real life, and connecting with them is a really important piece, beyond just understanding the medical background and saying that can happen to people. It's different when you can talk to somebody who may be at this experience or has done a couple steps ahead of you in their journey, their cardiac journey, whatever journey. It is, because different than reading about something on WebMD and not really understanding how it's going to feel or if you're experiencing that or not.

Speaker 3:

Anna Jaworski has written several books to empower the congenital heart defect, or CHD, community. These books can be found at amazoncom or at her website, wwwbabyheartspresscom. Her best seller is the Heart of a Mother, an anthology of stories written by women for women in the CHD community, and as other books, my Brother Needs an Operation, the Heart of a Father and Hypoplastic Left Heart Syndrome. A handbook for parents will help you understand that you are not alone. Visit babyheartspresscom to find out more.

Speaker 5:

Heart to Heart with Anna is a presentation of Hearts Unite the Globe and is part of the Hugg Podcast Network. Hearts Unite the Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to uplift, empower and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at wwwcongenitalheartdefectscom for information about CHD, the hospitals that treat children with CHD, summer camps for CHD survivors and much, much more.

Anna Jaworski:

Now we have Emily and Mabel in the studio with me. We're all together and I want to start by asking each of you to share a special memory with me that you have of each other. And Mabel, I'd like to start with you Special memory is a lot, I guess I would say.

Speaker 4:

I lived abroad for a semester in college and Emily was one of the couple of friends who came over to visit me and I think we were 20 or 21 at the time. We were in Italy, and who would have thought that little girls who met nine, 10 years old, 10 years later, around her they'd glass as a wine in Italy, where I'm walking around, roll and become so far ourselves, physically as well, to be able to go abroad, live abroad, do these things.

Speaker 4:

And then bring these friends together. I cherish that a lot. That was a great, really special trip, a really wonderful part of my abroad experience. I'm going to share it with her.

Anna Jaworski:

Oh, I love that story. That is so amazing and that was not in the book, so I just learned something new. That was amazing. Ok, what about you? Emily Joris mentioned memory with me of being with Maple.

Speaker 2:

Sure, that's a really hard one because all my great memories are with her. But I think, as you mentioned, we used to visit each other once a year. So we went to the mall one day and we used to love to watch Friends the TV show together and we loved the song lyrics and everything in the beginning, for I'll Be there For you. And on our shopping trip we found a best friend Forever Necklace in the shape of a heart that said I'll be there for you. That's split in half so we could each keep one half and it was perfect, not just because of the Friends TV show connection, but our deep connection. I don't know.

Anna Jaworski:

I love that. I can totally imagine the two of you girls being excited finding the necklace, and then each of you will be having half of it. So do you still have your necklace?

Speaker 2:

Yeah sure yeah, they get it right.

Anna Jaworski:

Oh my gosh, that's so awesome. I just love that. That's wonderful. Ok, ladies, I'd love for you both to share with me a piece of advice that you have for others who are growing up with the congenital heart defect. And, Emily, I'll start with you this time.

Speaker 2:

I'd say you're not alone, and the best advice I ever got was actually given to me from Mabel only a few years ago. She told me I've learned not to get mad at what my body can't do and be thankful what it can do. Start where you can and grow what you can. I think it's really easy to get mad and frustrated at everything that makes us different, but you can appreciate the things you can do, because they won't always be there in your regret not trying your best when you had the ability. Oh, I love that.

Anna Jaworski:

That's excellent advice, mabel. Now did she steal the thunder from you, or do you have other advice? Literally, I swallow thunder.

Speaker 4:

I don't wear a vice, don't worry. My advice is to be your own best advocate. Owning your condition is so important. Be your own champion. Pick up, ask question. I ask so many questions, I ask the same question in different ways and I say back what I think I'm understanding because I want to be completely in the know of my options, what I'm dealing with, what I'm thinking. It may be scary, but knowledge is power.

Anna Jaworski:

Oh, I love that. That is so true, and I think that's another reason why Emily writing this book is so important, because it provides more knowledge and, even though what she's gone through may not be what the reader is going through, they can see the questions that she asks and the struggles that she went through. They'll learn about some of the jargon if they're a heart patient or if they have problems with their eyes or some of the other problems that Emily had that she talked about in her book, because her book is about chronic illness, it's not just about her heart condition, and I think you're right. Learning to be your own best advocate, learning to ask questions that is so critical. I'm curious do you girls usually bring somebody with you to your medical appointments so you have that other set of ears to hear what's being said?

Speaker 2:

Since I've been an adult, as in going to college, no, my parents stopped coming with me. But when I was scheduled for the surgery, I said you're coming to meet the surgeon with me. I didn't say it was a question, a question. And so my friends would say, yep, check up. I had them come as well, and my sister. But other than that, routine checkups and ECHOs, EKG type tests, they don't come, I go alone.

Speaker 4:

I agree, I have the same experience. I feel confident managing as much as I can. If there's something going on, I want another person in the room to make sure that everything is being captured, so it can be overwhelming. And if a home and you're like what, I don't remember all of this stuff and having someone else there to process it, that's always helpful, those things.

Anna Jaworski:

It helps me to hear you ladies say that, because my own heart warrior turned 18 and said Mom, you don't need to come with me anymore. You've been preparing me all my life for this and I felt hurt. I was like, wait, I'm the record keeper, wait, I'm the one who has been into every single appointment, and listening to you ladies explain it the way that you just did that you did it, managing it, but that you know when to reach out for help, that makes me feel better. So hopefully my heart warrior will reach out to me if she needs me. But she has been navigating the waters really well herself.

Anna Jaworski:

I think it's really impressive how you all grow up with these really complicated conditions and you do go to those appointments alone.

Speaker 4:

I think at the testament that you, as a parent and other heart warrior or parents, that's what you want. You want your child to be able to manage the condition and to feel confident and secure and empowered and know you're there.

Anna Jaworski:

Thank you that we're there if they need us. That's really important. But thank you for saying that because you're right, and one of the things that you know once you become a parent is that your child will probably hopefully outlive you If you haven't prepared them for how to take care of themselves, what's going to happen when you're gone. So you definitely want them to be empowered and able to take care of themselves. I can't believe our time is almost up. This has gone by so fast. You girls are so much fun to talk to. But before we close, let's talk about the importance of having books like Emily's available to read. Mabel, can you tell me what it means to you to have Emily's book launching today? Today is the day that it is available to the whole wide world.

Speaker 4:

I'm very proud of her. I think twofold, I think. For me it's like a snapshot of my histories in there too. But having a book like this if you have a friend on call, in a way you can pick it up and you can just have it in your pocket when you need it.

Speaker 4:

We know that the community is important, that educating yourself is important and pushing yourself in the right ways is important, but sometimes you just want to have something there at hand quickly to refer to, and I think you find your passages, you find the chapters that relate to you, you find the things that stick with you and it always is so read it, I can grab it.

Anna Jaworski:

I love that you always have a friend right there with you. How sweet is that? Ok, what about you, emily? Tell us what it's meant for you to write and publish your book.

Speaker 2:

So, as I'm motivated, when I was writing I kept telling myself it's not just my book, it's Mabel's too, because, as you can tell, I'm a bit timid and she's really brave. So I thought, be brave like Mabel and share. But anyone, not just me. She will tell a stranger and I would never, unless I had to, and she's always been really brave about scars. She doesn't hide them and I'm not very brave. So I just kept saying push myself, don't give up. I want to help people, and young people need something like this, because I always wanted to hear about somebody who was older than me, who had my condition in thriving, because I always heard about other people with more common conditions. So I just hope this can help even people who don't have alkepa, so you can grow up and get older and go through ups and downs and thrives, and my biggest wish is that this helps people.

Anna Jaworski:

Yeah, so you can meet your friend in Paris and have a glass of wine together. How awesome is that? I just love it.

Speaker 4:

We did a lot of class here.

Anna Jaworski:

What's that we were?

Speaker 2:

looking for her. We met up in London last year. It was fun. We had a great time.

Anna Jaworski:

What did you do in London? Did you take in any plays?

Speaker 2:

No, maybe I had some fancy jobs. It was a business trip for her and I was there on vacation, so we met for a very nice Italian fancy dinner and we didn't have time for shopping or the sites because she's so busy, but it was great. We went to dinner and we'd never done anything so grown up like that together in a way, cause usually we just go on a little vacation somewhere nearby to our houses, never overseas.

Anna Jaworski:

Oh, my goodness, that sounds like so much fun. I'm so glad that you girls could share. Really, it is a joint story. You shared both of your stories with the world and Mabel I imagine Emily asked you if it was okay with you or her to share as much as she did, because she shared text messages and conversations, and I want to thank you for opening up and allowing her to share that with the world.

Speaker 4:

Yeah, of course, anything from Emily.

Anna Jaworski:

I just love you too. I wish I could give you girls a big hug, because you're just so wonderful and you have the kind of friendship I think everybody wishes they had. Everybody needs a best friend like the two of you have one another.

Speaker 4:

Yep, it's true, very lucky.

Anna Jaworski:

Thank you so much for coming on a program with me today, Emily. This has been so much fun. Let's tell everybody where they can find your book.

Speaker 2:

The master website is BabyHeartsFriends and his website, so you can go there to click on links to buy it in paperback, audiobook or ebook, and it will direct you to the retailer of your choice.

Anna Jaworski:

Isn't that awesome. I'm so impressed that you have it available in audiobook, ebook and a printed book. That is just amazing. Did you do the narration yourself?

Speaker 2:

No, I hate reading aloud no.

Anna Jaworski:

OK, so you found a voice actor to do the narration for you.

Speaker 2:

Yes, she's very good. I hope everyone enjoys it. If you prefer audiobook, and you just have to imagine Mabel's voice when you hear her talking in the story.

Anna Jaworski:

Yeah, now that we've all heard Mabel, we know what she sounds like. But that is wonderful. So I wish you the best of life. Friends, Do check it out. I'll put a link in the show notes. It is BabyHeartsPresscom. Emily has her own page. It'll take you directly to the type of book you want to buy. So thank you, Mabel, for coming on this show today. This has been so much fun. Thank you for the pleasure. Thanks, Emily. I have a feeling we're going to be hearing more from you in the future. Thank you, and thank you for all the opportunities you've given me.

Anna Jaworski:

I'm so excited about this, friends. That does conclude this episode of Heart to Heart with Anna. Thanks for listening today. I hope you found this program as enjoyable as I did. It has been so much fun talking to these two best friends. If you liked the episode, please consider becoming a patron to support our program. And remember my friends, you are not alone.

Speaker 5:

Thank you again for joining us this week. We hope you have become inspired and empowered to become an advocate for the congenital heart community. Heart to Heart with Anna, with your host, anna Jaworski, can be heard at any time, wherever you get your podcasts. A new episode is released every Tuesday from noon Eastern time. No-transcript.

Emily Falcon
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