Encore Presentation of Sports and Extra-Curricular Activities for CHD Survivors

Are children with critical congenital hearts able to play sports? What kinds of extra-curricular activities interest heart defect survivors? What can parents do to help their children born with broken heart do to help them enjoy sports?

Thanks to our newest HUG Patron, Ayrton Beatty and long-standing Patrons: Laura Redfern, Pam Davis, Michael Liben, Nancy Jensen, Alicia Lynch, Deena Barber, Carlee McGuire, Carter & Faye Mayberry, and Frank Jaworski. We appreciate you!

Transcript

spk_0:   0:00
today's encore presentation deals with the topic that so many people ask me about when they find out they're pregnant with a child with a congenital heart defect sports. When my son was young, I wondered how he would tell great physical exercise. Since I already had one son who was heart healthy, I wondered how he and his brother would play together. Today's episode features three congenital heart defect survivors and their stories about participating in sports and extracurricular activities. I help Listening to these three adults will give you some answers to the questions you may have

spk_1:   0:33
welcome

spk_2:   0:37
to Heart to Heart with Anna featuring your host Anna Dworsky. Our program is a program designed to empower the CH D or congenital heart defect community. Our program may also help families who have Children who are chronically ill by bringing information and encouragement to you in order to become an advocate for your community. Now here is an ID Dworsky

spk_4:   1:00
10th episode of Heart to Heart with Anna, a show for the congenital heart defect community. Our purpose is to empower members of our community with resource is support and advocacy information. Today's episode is called Sports and extracurricular activities for congenital heart defect survivors. Thanks to advances, the medical science 90% of the baby's born today with a congenital heart defect, or CHD, will live to adulthood. What does that mean regarding sports and extracurricular activities for the CHD survivor? What kind of quality of life can have regarding sports and hobbies? Quality of life seems to be an issue that has discussed a great deal when it comes to Children, congenital heart defects or C c. HDs. Each of our guests today was born with a C C H D. About 25% of CHD zehr, considered CCH D's Children with C C H. D S needs surgery are other procedures within the first year of life. They're at risk for death or disability if their heart defect it's not detected soon after birth. The heart defects classified. A C C H. D is include one or more of the following court ation of the aorta. Double outlet, right ventricle de transposition of the Great Arteries. Epstein's anomaly, Hypo Plastic left heart syndrome, interrupted aortic arch pulmonary atresia within tax septum. Single ventricle, total anomalous pulmonary venous connection, tetralogy of fellow try custody atresia and trunk. It's arterial assis. Some people with treated CC HDs have few related health problems later in life. However, long term effects of CCH D can include developed, delayed development and reduce stamina during exercise. Or so the literature states. Could it be that some people with CC HDs can defy the literature? Today we'll meet three adults with CC HDs who have thrived despite being born at a time history when a surgeon to save their lives were still considered experimental. Our guests today Toria Scoggins and Alexander Dworsky. They will tell us about what kind of sports and extracurricular activities they have enjoyed while growing up, Cummings wrote, at only two months of age was discovered that I had been born rich. Extra cardio site is in Versace, with a single ventricular bilateral Cavite El Lupo, my position of the Great arteries and an atrial ventricular septal defect. To put it simply, my heart only has two chambers, and it's on the opposite side of my boss body facing my shoulder blade. When I was 15 I was diagnosed with psychosis, a severe curvature of the spine, the causes one to have a humpback. The condition threatened to crush my internal organs. I had to 18 inch steel rods bolted to my spine to correct the problem. As a young child, I was also diagnosed with attention deficit hyperactivity disorder. I was prone to lashing out, never knowing where to put my energy. It was easy to have thoughts of loathing and self doubt. I didn't fit in anywhere or have a group of true friends. But instead of having a negative attitude, I walked into a small karate school in central New York called Brooks Karate. That was the best decision I ever made. We'll meet Victoria Scoggins and Alexander Dworsky later in our show. Thank you, Mark, for being on the show.

spk_5:   4:21
Thank you for having me.

spk_4:   4:24
I have a Sep interested to eat what she wrote when you said walking into Brooks karate was the best decision I ever made. Can you tell me what made you walk in there in the first place? And exactly how karate training has helped you to define your life?

spk_5:   4:39
Yeah, absolutely. Um well, I always town was like, uh against a crowd. You want to be growing up? I would, uh, watch the movies and tried in the late a lot of the actors, um, always dreaming of being the hero. And oh, always saw that martial arts was, uh, where the little guy could overcome the big guy. The strong, eh? So even though I was a saint Arnold torch in here, I was more of a fan of martial arts. And when they challenged my friend, who actually was in martial arts to a flexibility contest, it looks safe. One and he looks at you. But you're already pretty good. You should join. So what was the mom that want join Killer? I keep in mind that for the longest time we threw it around, but this time I was determined to join. So

spk_4:   5:29
So that's awesome. Really. It was not you just happening to walk into the school, But you actually knew somebody asked him with a student there?

spk_5:   5:38
Actually, no. You went to a different crowd of school

spk_4:   5:42
todo school. So why didn't you join the school of people onto?

spk_5:   5:47
Actually, he didn't go at the time. And the school human to Woz when Ah, he actually lived in the area where it was same distance between the two schools. For me, it would have been a long drive to go there.

spk_4:   6:01
Okay, so how does that helped you to define your life, Mark?

spk_5:   6:08
Why? I found my new, uh, your passion before I have, like, a lot of hobbies and interests and stuff, but, uh, I was actually pretty good at martial arts, so I knew if I worked hard at it like, you become really good at it and, uh, the harder I work, the better I became. And I could see my progress. I guess seeing my progress really head into it. So I kept going.

spk_4:   6:36
So, Mark, I'm amazed that you're able to do those karate moves, considering you have those 2 18 inch rise connected to your spine to the rods inhibit your flexibility at all.

spk_5:   6:48
Uh, not really in. My legs are lower back there in the upper back. Thank God. Um, I can't God curved my back at all, but in some ways actually helped out because a lot of times when you're stretching, you want to keep the back straight and yours. Well, I have good posture when you're doing someone stances and stuff. So it's kind of like give or take against the blessing and the curse. Ball one.

spk_4:   7:13
Yeah, well, you definitely have good posture, right, man? So you mentioned that you have attention deficit hyperactivity disorder. How did? Having a DHD. Why did it affect you?

spk_5:   7:27
You know, I just I don't have it. You know, uh, you're going to deal with better. Hard time is the usual hard time focus. Um, unless something really that interest me. Ah. Did you do in school? A lot of times, but to be honest, um, it, uh, more of the martial arts I did, the more focused I became, and never easy. I was able to kind of try to overcome it, I guess. Or to control it. I'm still positive. Dreary head or ugly head up every now and then. But for the most part, uh, I'm not nearly is, uh is bad. I mean, he asked. A lot of my friends are still fidget, but

spk_4:   8:15
when my son was in karate, one of the things that his instructor taught to them about was becoming centered. And it seems to me that with your enhancement of your skills and karate, that learning how to be centered and to be only in that moment would help you to overcome some albums with the A D h d. Is that true?

spk_5:   8:39
Oh, yeah. I mean, uh, that thing you do is I guess you can, um I help you. Focus helps you determine. You mean when you say centered, it's no oneself better. So it's helped tow. I kind of just balance all your life. Stay focused. Use your goal setting. Visualize your goals and keep working at it. It's I guess it's almost the peace you get when you think about I can do it. Relax. I'm not stressed out about, uh although I say that it's not that I'm perfect at that all the time. I still stressed out and, uh, some other Do you know what? I have some problems focusing, and and, you know, the gold can look a little far, but as as we all know, where we're all human, we can only strive to be better than what we were yesterday.

spk_4:   9:37
Absolutely. So it sounds like you had a number of things to try and overcome while you were in high school. You were dealing with having the surgery on your back. What? How old were you when you had that.

spk_5:   9:51
Ah, while the thing is, I got held back in kindergarten, and then I got held back before I Just before I had the surgery, eighth grade. So I had surgery in between my two years of eighth grade. Um, so I was 15. I was actually pretty old to be And a great ah, getting gun was more maturity. And, uh, just about Tom's focus, and I would say great was actually literally pretty much all my fault. As you know, I mean, you can't change the winds but change sales on your boat. So,

spk_4:   10:32
did you have some help in school? Did you have any people who we're helping you to deal with the 80 HD, or did you just have to learn how to do that yourself?

spk_5:   10:43
Uh, you know, looking back, I had a lot of teachers. Um, I'm learning about history right now, and, well, I could do not learn in history class in looking back, I had a lot of good teachers that thought that stuff from history, that's just an example. But I did have good, good teachers. Um, of course you know, being young and hating school. I appreciate it. like I do today. I also had friends. Unfortunately, the thing I would do is I focus on, um the people who didn't like me or people wouldn't accept me would be worried about them rather than worried about the actual people. Love me. So thankfully, I was able to, uh I kind of I guess he's light and start not really being too worried about the Mayfair's and and embracing Thea the positive people I had in my life.

spk_4:   11:39
And that's exactly the kind of sentiment that you display on your Web page. I love your Facebook page for, doesn't you listening? You need to check it out. It's Mark Cummings, half the heart, twice the determination. And I love one of the quotes that you have on there. You said my hope with this page is to inspire and motivate not only others but myself. A swell. So can you tell us how having that Facebook page helps to keep you motivated? And can you also tell us what you others with congenital heart defects can do to help keep themselves motivated?

spk_5:   12:14
Absolutely. Um, the ass with you, uh, any positive story can be pretty motivating. Um, when you hear about anybody doing what they can't are trying to do the best or just trying to be better than they were yesterday. Uh, you can always find a little bit of light inspiration from there. The fact that I know what I'm doing impact on other people. That's pretty, uh, pretty motivating in itself. So, um, I guess the thing I would have to say to love by our people was being kind of heart condition. The fact of the matter is, just because you were given, I guess the diagnosis doesn't it doesn't always mean that brilliant, that sentence or anything like that. We always have things we can try to improve on our life. We always have things where we can, um, strive to be a better person. I've ever put up a post one time. And there was this difference between a successful person on successful person on successful person always comes up with excuses. Now, don't confuse reasons it was excuses. But when I say excuses, I mean, um, if I can't box doesn't mean I can't in America are doing marathon in my wheelchair, right? Or if I can't speak, doesn't mean I can't speak with my hands or anything like that. So we could always, always tried to become a better person. And on the post, someone actually posted. Ah, that. What I said was I was being a positive attitude bully. And then she displayed all betrayed to people that saw the unsuccessful person. Um, and keep in mind that thes air, actually, people who influence kids And sometimes I think a lot of people miss uh, understand what success is. I want to be a teacher. I want to be the best teacher I can be. And I succeed at it. That's a success himself. Not everybody's gonna be Jackie Chan of Donald Trump or want to be. So

spk_4:   14:35
I just went

spk_5:   14:36
along with that.

spk_4:   14:38
Well, it's something. I'm sorry, but it sounds to me like what you're trying to do with your Facebook page and what you're trying to do with your life is to set a good example for others.

spk_5:   14:49
Yeah, yeah. Most tryto try to be the 1st 1 I could be, um so unfortunately, but Facebook, it's the lease. You're just always post positive and try to be that that positive thing that people could go along. You know, I might be having a bad day, but least I can go positive on that age

spk_4:   15:13
for you, Mark. I think that your entire life and you know, photos that you have put on your website and just showing parents that kids who have critical congenital heart defects can do karate.

spk_5:   15:27
We have. Ah, that kind of brings up a funny, um, funny factor story. Um, I couldn't do sparring for the 1st 2 years. Even though the doctors gave me the verbal okay to my instructor was afraid to feel like I written. No. And they're still slowly edge me into sparring. So it wasn't like I did like hitting right away. And why states part? I mean, just tag spine. So even for 1st 2 years, even though I couldn't star, I still did forms weapons, you know, I still did. Ah, well, the other thing that you can do martial arts to ah, to enjoy, to become better at it. So I became really good. That forms. So that would be another example of just taking what you can do and work with you.

spk_4:   16:18
Absolutely. So did you wear a protector when you actually did start spark.

spk_5:   16:23
Yes. Yes, I didn't, uh, I think even for a while, they weren't really allowed to hit in the body too hard. Um, it's funny, though, Is looking back now, I I wear a lot of self defense here, and you've done kickboxing classes. Um uh, you know, of course, What factors? Clearance. And eventually I just was able to get okay from the doctor saying, For most I have a clean bill of health,

spk_4:   16:52
and I bet that clean bill of health meant a huge deal to you that that probably changed your life.

spk_5:   16:59
Um, I think my life is pretty changed by time. I got that. I think it was just him Finally, just or not even finally, because he kind of saw it. We knew it, but, um, it was just just saying it out loud, I guess, because he never all the restrictions he took off on and that that was actually finally, at the time when Hey, I didn't have to take anybody actually more together. That that is there anything like that? So, um, for the most part, any of the congenital heart defect common stuff people usually have to do Fortunately, I don't have toe be, Ah, I'll have to really do it too much anymore. So

spk_4:   17:41
Well, it has been delightful talking to you, Mark. Thank you so much for sharing your page with us and for sharing some of your experiences with us. I have a feeling that will be very meaningful to other parents who have Children with congenital heart defects and are wondering if their Children can do karate. So now we need to take a commercial break. But don't leave yet. Coming up, we have another congenital heart defect survivor who will be sharing her story with us. Find out how she dealt with the Texas heat, one watching in her high school marching band and what activity she shared with her cousin when we returned to heart to heart with Anna.

spk_2:   18:27
Gorski has written several books to empower the congenital heart defect, or CHD community. These books can be found at amazon dot com or at her website, www dot baby hearts press dot com. Her best seller is The Heart of a Mother, an anthology of stories written by women for women in the CHD community and his other books. My brother needs an operation, the heart of a father and Hypo Plastic left Heart syndrome. A handbook for parents will help you understand that you are not alone. Visit baby hearts press dot com to find out more. Anna Dworsky has spoken around the world at congenital heart defect events, and she is available as a key note or guest speaker. For your event. Go to heart to heart with anna dot com to learn more about booking Anna for your event. You can also find out more about the radio program. Keep up to date with CHD Resource Is and information about advocacy groups as well as read Ana's Weakly Blawg. Anna wants you to stay well connected and participate in the C H D community. Visit Heart to Heart with anna dot com. Today

spk_1:   19:42
you

spk_2:   19:44
are listening to heart to heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Gorski at Anna at heart to heart with anna dot com. That's Ana at heart to heart with anna dot com. Now back to heart to heart with Anna

spk_3:   20:03
back to our show. Hart to Hart Madonna, a

spk_4:   20:06
show for the congenital heart defect community. Today we're talking with congenital heart defect survivors Mark Cummings, Victoria Scoggins and Alexander Dworsky. We just finished talking with more comings about his experiences with growing up with a congenital heart defect and how karate changed how he viewed himself as a person and allowed him to channel his energies in a positive way toward helping himself initially and now helping others as he works with his Facebook page and instructs Children and karate and self defense. Now we will turn our attention to Victoria Scoggins, Victoria wrote. I was born on March 31st 1983. I was one month old before my parents knew that I had a heart defect. After confirming I had lost weight, the doctor took a chest X very. The next morning, we saw a pediatric cardiologists where I was diagnosed with Try Cusp. It atresia, hyper plastic right ventricle, court ation of the aorta and ventricular, an atrial septal defects. I was also in heart failure. We flew to Houston that night, and I had a subclavian repair for mark or irritation, and my pulmonary artery was banded the next several years we put off the Fontane procedure until it was no longer considered experimental, and I was older and bigger before having a Fontane. I was in ballet tap, a musical performance just like my cousin. I had a hard time keeping up with my peers. In high school. I joined the marching band just like my middle brother had done misters degree and health care of ministry the veterans helped administer in our next segment. Thank you, Victoria, for coming on heart to heart with Anna

spk_7:   21:45
Anna.

spk_4:   21:46
Well, Victoria, I've known you for a very long time because your mother, Rita and I used to belong to the same congenital heart defect list. Serve. And then your mom wrote for my book The Heart of a Mother. I remember being so excited to hear about to being in a marching band because that's something I did in high school, too. Can you tell us a little bit about what instruments you played and what it was like being in a marching band in South Texas? I know where I was in Central Texas. Sometimes it was really hot

spk_7:   22:15
hurt when I when is it came to be an option for us in sixth grade. I wanted to by the drums. So I went into percussions for sixth grade and I learned how to play the bells and all those percussion instrument. And I played that until mid year of my eighth grade here. I believe it was, and then I wanted to switch to the clarinet because that's really what I wanted to play. My brother had played that in high school, so I continued on to play the clarinet through marching band in high school. Um, from my freshman to junior year by senior year, um, we decided that it was best that I go back to percussion because it was a state here, and so they wanted me to be in the pit where we don't actually march. But we still are part of the marching band,

spk_4:   23:18
right? A lot of times are percussion sections stayed on one side of the field, and that way everybody could hear the music from the drums the same way. If they had been on the field with us, that might have thrown some of us off.

spk_7:   23:35
Yes, aren't dumb marched, but everything else, um, in the percussions and and, um, you know, being in South Texas. It was very hot when we practiced Monday through Thursday on, um, a black top field. So it was actually the parking lot at the high school, and we practice on that. It was very hot. Um, my mother was able to get me, and it was used for all the band members. A little tense that covered, um, for some. So when we took breaks, a lot of the other band members as well as I would go and get some shade and water

spk_4:   24:23
doing all

spk_7:   24:24
right.

spk_4:   24:25
Yeah. I remember in Central Texas, where I was in the marching band, that it was not uncommon in the summer, especially because we started practicing in August, before the kids came back to school. And it was not uncommon for kids to pass out on that blacktop. We did the same thing. We we practiced on the asphalt parking lot, and the heat was just intense.

spk_7:   24:48
Yeah, I know that, um, for me, I would I would come home after band practice, be very tired and from the hate exhausted. But, you know, I wanted to be in the marching band and I wanted some kind of activity where I could get out, meet people. So this was the activity I had chosen.

spk_4:   25:10
I was. Someone is when I found out you played clarinet. It's very uncommon for a person with a severe heart defect. To be selecting a woodwind instrument takes a lot of air to play the clarinet.

spk_7:   25:23
Yes, it does. It was learning how to manage, um, Martine and play my instrument at the same time. There were some times when you know, during games I would just have to hold back a little and keep up with the formation. But I was still able to keep up with my peers. Now, right after we got off the field, I would take off my uniform because I was so hot and get a drink of water to get hydrated again.

spk_4:   25:57
So that's what it's like. You knew how to limit yourself so you wouldn't perch herself. But how you could still be part of the band.

spk_7:   26:07
Yeah, And that practice. Um, my first year when I was a freshman, Um, you know, I wanted to do everything that my peers could do. I wanted to not take breaks when, um, no one else was taking breaks. But I learned that for my help, I needed to do what I needed to do. And sometimes that meant not being like my peers taking care of my body.

spk_4:   26:36
I think that's a really important lesson for people with congenital heart defects to stay hydrated. Because if your body becomes dehydrated, you can have arrhythmias. And for people who have had open heart surgery like you've had the chances of having arrhythmias this heightened anyway. So, Victoria, let's talk about dancing a little bit. So you said that you and your cousin both took dancing as young Children. What do you remember from that? And it was it a good experience for you?

spk_7:   27:05
Um, I don't remember too much again. I was a little and I'm older now. So, um, I gotta go way back in my my memory about their butt. I remember that I was the little head. I stand around with the other kids. Of course, you know, we're six, so we don't really no what we're doing. But we watched the teacher a lot, so I would I would watch the teacher on the routine, but I don't remember having busted out a lot because I was just tired, and this was before my surgery. So, um, I didn't have the blood flow like I do now,

spk_4:   27:42
right? So you did that before you had your Fontane procedure, right? So now that you've had your fun tan procedure, can you tell us what being in those different lessons meant to you as far as a person growing up? Like what kind of advice you would give parents about allowing their Children to take different kinds of lessons when they're growing up?

spk_7:   28:04
Well, I think it's important to let your kids figure out what they're capable of doing because of the parents keep holding their child back because doctors or they're scared. Um, the child never gonna learn what he or she is capable of. And, I think my parents allowing me to be in, um, extracurricular activities that work hard, harder for me than other people let me to learn what I'm capable of doing now. And as an adult, my parents weren't there to tell me You can't do that. You need to watch out. They still do. But they aren't there every minute. But I was able to learn what I can and can't do. And like now I go to the island with my friends but walking in the saucy and is very hard for me. So I learned to make my own modifications. When we go to the island, I don't take much. I make sure I take a towel, plenty of water. And I looked for places where I don't have to walk in the soft band as much. So bye. My parents allowing me to do other activities. I've learned how to make the necessary modifications so I don't pass out or get too tired or too hot.

spk_4:   29:32
All right. It sounds like both you and Mark were really good at learning what kind of modifications you needed to make in order to be successful.

spk_7:   29:41
Yeah, I think

spk_4:   29:42
so. Well, I'm so proud of you for earning your master's degree and for working in the hospital setting. And I have a feeling that your experiences with hospitals makes you an even more valuable employee.

spk_7:   29:58
I think so. I think that, you know, um, a new patient, I can see the patient perspective, but I also have to see the administrative perspective into intertwine. The two comes fairly easy to me because I have been a patient and been in the hospital. Four different procedures. So I know what it's like

spk_4:   30:20
Absolutely well, thank you so much victory for coming on our show and sharing your experiences with us. Now it's time for another commercial break, but don't go far. Stay tuned to find out how another adult with a critical congenital heart defect dealt with hiss physical limitations while growing up, find out how he not only coped but found a profession that has changed his life when we returned to heart to heart with Diana.

spk_2:   30:52
Dworsky has spoken around the world at congenital heart defect events, and she is available as a key note or guest speaker. For your event. Go to heart to heart with anna dot com to learn more about booking Anna for your event. You can also find out more about the radio program. Keep up to date with CHD Resource Is and information about advocacy groups as well as read Ana's Weakly Blawg. Anna wants you to stay well connected and participate in the C H D community. Visit Heart to Heart with anna dot com. Today, Anna Dworsky has written several books to empower the congenital heart defect, or CHD community. These books could be found at amazon dot com or at her Web site, www dot baby hearts press dot com. Her best seller is The Heart of a Mother, an anthology of stories written by Women for Women in the CHD community and his 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 baby hearts press dot com to find out more.

spk_1:   32:07
You

spk_2:   32:09
are listening to heart to heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Gorski at Anna at heart to heart with anna dot com. That's Ana at heart to heart with anna dot com Now back to heart to heart with Anna Welcome back

spk_3:   32:29
to our show. Heart to Heart with Anna, a show for the congenital heart defect community. Today we are talking with congenital heart defects survivors Mark Cummings, Victoria Scoggins and Alexander Gorski. We have heard from or Cummings about his experiences with growing up with not only our congenital heart defect but also severe curvature of the spine to conditions serious enough to prevent anyone from pursuing sports or any kind of physical activity. And yet he has 1/3 degree black belt in karate. We talked with Victoria Scoggins about how she was able to participate in marching band in South Texas and how she also took dancing lessons as a child. And now we will meet Alexander Dworsky, Alexander writes UPS Born on August 11th 1994. I was diagnosed with hypoplastic left heart syndrome when I was two months old, and the doctors told my parents that the odds of me surviving surgery were extremely small. Despite that, I had my first surgery within days and my second surgery when I was nine months old. I didn't need surgery again until I was 17 years old. When my Fontane was converted to an extra cardiac want Ian, my father and older brother did karate since I was little, so I started doing it when I was six. I continued until I was 10 after earning my black belt. At that time, I was getting into robotics and participated with teams in annual first Lego League and rubble fest competitions for a few years. When I was a teenager, I joined the local swim team with my brother. I also went to rock climbing gyms with my friends periodically, and I took tennis lessons at a country club as an engineering student at N Y. U Polly, I now exercise by walking across the Brooklyn Bridge every day. I can welcome to heart to heart with Anna Alexander. Let's start your segment by sharing that you are not only my guest but also my youngest son.

spk_6:   34:18
If I am, thank you for having me today.

spk_3:   34:21
Well, Alex, I'm so happy that you could be on my show. And let's talk about taekwondo first when you and your dad and your brother were taking part in it, You all did a lot of different things, just like more talked about. You did forms. You did Marshall Ballet. You did self defense and sparring. So what was the most difficult part of your taekwondo experience for you and how did you deal with it?

spk_6:   34:44
I never felt like there was any big problems at the time, was only looking back on it that I can really be more observant about it and the biggest issue with probably that I had less stamina and the other Gage can ever get out of breath a lot quicker. And every became a big problem because after short kept an eye out and he read for me, if I had to make me rest until I needed Thio, just like Victoria, I wanted to keep up with all my peers, but he knew better than I did what was good for me.

spk_4:   35:14
Yeah, that's because we could see things that you couldn't see not just sitting in the

spk_3:   35:18
observation room when he really stepped up the aerobic workout. When Joey and Aaron and some of the other boys were preparing for their black belt test,

spk_4:   35:28
he would make you run extra laps in the dough, Joe, and you would be okay

spk_3:   35:33
for the first lap in the second lap, and around the third lap, your nose would turn blue and the tips of your fingers would also turn blue. That's when he grabbed you. I

spk_6:   35:44
never paid attention to not furtive thing back then, right? Probably a good thing you're still dreaming about on that

spk_3:   35:52
is a very good thing he had knows you were two years old, so he was very cognizant of what your situation was like with your heart defects. But, you know, he never let that stop you. When you were sparring and that really scared me, I thought you needed a protector. I just asked Mark if he used when, and he said he did. But Mr Schulz never had You were chest protection?

spk_6:   36:16
No. Re tended to aim for the head more because we knew we all had headgear on. I think now is the biggest. Agree. Then we didn't worry about it so much.

spk_3:   36:27
Yeah, you didn't worry about it.

spk_6:   36:28
I never worried about

spk_3:   36:29
it. Read about it all the time. I hated it when you had to do sparring. But you did learn so much from being in karate. Yeah, and I was really sad. You decided to take a break from it. However, that's when you started doing your robotics. So why don't you tell us a little bit about what it was like when you started your robotics team and how your robotics teams did Over the years,

spk_6:   36:56
First couple of the earth were of course, when you were perfect getting used to the competition, that was more about finding her bead. We changed most of the team getting trip if every we started progressing to state competitions and we got into it first, we were only doing eh, Fellow tournaments. We shared it all for doing Robert Best under 1/4 or fifth year, and eventually we made it to the international tournament for both f l L. And robust.

spk_3:   37:28
Yes, it was quite an experience to watch your team's grow. We had a steep learning curve, but then it seemed like everything started to fall into place, didn't it? Alex

spk_6:   37:39
did do it? Absolutely.

spk_3:   37:41
And then I think that having that f l l experience especially, but even Robo fest to helped you to decide what you wanted to do for college. Can you tell us a little bit about that?

spk_6:   37:51
Yes. I started going to college and I was 14 I'm afraid. My teacher we're running out of things to teach me at home school. So she found that there was a nearby college in Waco Court TFT Fever of Texas State Technical College, and they had a very good credit program I started out, I took a defeat. Forget class there, and I did really well and I like the teachers. And for that I started taking three courses, everything after, and I just kept going and going. I got into the degree program to get a A surfeit of degree in Applied Sciences, and by the time I was 17 I had I finished that I worked with industrial quality robots and I would absolutely in engineering. By that time, I knew that was what I was going to do.

spk_3:   38:46
You did, and you seem to be such a natural at it. One of the other things that made me so proud Alex was that in addition to working at the college level, you did go to your international competition. That's why you were in college, which was quite challenging. But then when you became too old, which sounds funny, but you were too old to be NFL L as a competitors. Er you turned around and you were a helper. You were either a judge or we helped out in some way at the local competitions, and even in Houston, we drove all the way to Houston to help out,

spk_6:   39:21
Did you?

spk_3:   39:22
How did you feel that that helped you as a person?

spk_6:   39:26
How my mature. But I think because I was not used to being the one in charge like that with everyone where my judgment had a lot of weight there and I knew what I was looking for. And I knew what I was thinking about the team's robot. But it was a little I had never done anything like that before, with a little unexpected how important it felt. It was little. I was nervous the first couple of times I got juiced. Hear it? And I would definitely do it whenever I have the opportunity. But the first couple of times, it really helped me get a little Britain were responsible, I think,

spk_4:   40:08
Yeah, I think it

spk_3:   40:08
did, too. I want to talk to you on a totally different topic. Now I want to talk about swimming and what it was like for you as a swimmer. Can you remember when you first started swimming?

spk_6:   40:21
That was mainly because my word brother was on the swim team, and I think back then I wasn't getting much exercise and we were at the front center throw up in any way I've started to. I wanted to join the French team so I'd have something to do instead of fitting on the bleach of all the time. The first couple of times I wasn't able to make it onto the team because of the water with fair court. I just couldn't take it for very long. And then you got me a wet suit and that kept me warm, very warm. So I had no problem making it on time team after that.

spk_3:   40:58
I think that's really important for parents to know that if the child really wants to do something, you may have to find some kind of modifications with Mark. He wasn't able to to do the sparring for his first couple of years, and then he wore chose protection because of all the surgeries that he had had. But with that protection, he was still able to participate with his friends and the same thing with you. You couldn't make the swim team because you would be so cold and shivering and talk about a blue nose on my goodness that the swim instructor used to tease and and say that you look like a smurf.

spk_6:   41:35
Yeah,

spk_3:   41:37
you really turned blue. And as soon as we got that wetsuit for you, it changed everything. You were finally warm enough that she were able to had the endurance, and you actually became a pretty good backstroker.

spk_6:   41:51
I did? Yeah.

spk_4:   41:53
And it's

spk_6:   41:53
good. You're like fun, you know?

spk_3:   41:55
Right. So what advice would you give to parents of young people who have serious heart defects regarding how they should handle sports and extracurricular activities?

spk_6:   42:06
You have to maybe find from particular equipment do overcome their shortcomings. And I also just means that sometimes you have to work a bit harder than from a normally word in order to do it. It's It's definitely something you should do if you can. We have. I think, off with her defects have more to prove, so we can be even more proud of yourself. When we do succeed, it things like karate, swimming, everything that seems to be out of her reach. You know when we can do it. It's something to really take pride in.

spk_3:   42:45
I agree. I agree. I think that for all of you for Mark and Victoria, and you two have been successful with the marching band in The Karate, the swimming, the robotics. I do think that you will have to work a little bit harder. I really do. But I do think that the reward is even that much greater. Absolutely well, thank you so much for being on the show, Alex. And this has been a lot of fun. Now it's time for another commercial break. But don't leave because it's almost time for a miracle moment in today's miracle moment deals with probably the most famous athlete with a critical congenital heart defect in current history. Find out who the flying tomato is, what his heart defect is and what he has accomplished at the Olympics. When we return,

spk_2:   43:40
Gorski has written several books to empower the congenital heart defect, or CHD community. These books can be found at amazon dot com or at her Web site, www dot baby hearts press dot com. Her best seller is The Heart of a Mother, an anthology of stories written by Women for women in the CHD community. Ana's 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 baby hearts press dot com to find out more really. Anna Dworsky has spoken around the world at congenital heart defect events, and she is available as a key note or guest speaker for your event. Go to heart to heart with anna dot com to learn more about booking Anna for your event. You can also find out more about the radio program. Keep up to date with CHD Resource is that information about advocacy groups as well as read Ana's Weakly Blawg. Anna wants you to stay well connected and participate in the C H D community. Visit Heart to Heart with anna dot com. Today

spk_1:   44:56
you

spk_2:   44:57
are listening to heart to heart with Anna. If you have a question or comment that you would like addressed on our show, please send an email to Anna Gorski at Anna at heart to heart with anna dot com. That's Ana at heart to heart with anna dot com. Now back to heart to heart with Anna Welcome back to

spk_3:   45:18
our show Heart to Heart with Anna, a show for the

spk_4:   45:20
congenital heart defect community. Our purpose is to empower members of our community with resource is support and advocacy information. I want to take another moment to thank my guests. Mark Cummings, Victoria Scoggins and Alexander Dworsky, all three of these young adults just like them. Young man whose story I'll share with you in a moment were born with critical congenital heart defects. All of these young people were born with invisible birth defects. For the most part, C C HDs cannot be seen. The only time anyone sees anything amiss is when our heart warriors dare to go bare chested or expense. A significant portion of their tour says, so that people see the scars or surgeries have left behind. In a mark's case, it's not just a friend of his body that sports an impressive scar, but his back, too, because of his spine surgery. But I love about all of my guests in the Miracle Moment. Story I'll read in a minute is that their defects stayed invisible while they were growing up. None of these people allowed their birth defects to define them. They defied the odds, and instead of making excuses for why they couldn't do certain activities, they simply made things happen. But I also love is that when they needed to, they were unabashed about changing tactics. When swimming was too difficult for Alex, he donned a wet suit when he couldn't do what other kids could do in the water. All of a sudden, that wetsuit allowed him to do it. When he realized he didn't have the stamina to go for his second degree black belt, he took up robotics instead. Victoria has air not only a bachelor's degree but also a master's degree and now works in a hospital setting. All of these young people have not only had a good quality of life, they've had a remarkable quality of life. And such was also the case with probably the most famous congenital heart defect survivor to ever make it to the Olympics. Shawn White, also known as the Flying Tomato like Mark Victoria and Alex Sean, was born with a critical congenital heart defect. Like our guest today, Sean refused to let his heart defect to find him. Our miracle moment today is from NBC Sports Vancouver 2000 and 10 most popular athletes. You can read your story yourself or if you want to check it out on a heart to heart with Anna website at www dot heart to heart with anna dot com, and you'll even see a link that will allow youto watch on white inaction. His beyond biography begins with half pipe coronation Entering the 2006 Torino Games, White was widely considered the favorite to take Olympic gold in men's half pipe. However, the Carlsbad, California, native got an early scare when a mistake on his first qualifying run left him with just 37.7 points. Facing a do or die scenario to earn a spot in the final with his second qualifying run, White ended up qualifying with ease on that second rent and then the final. He did not disappoint, claiming theologian pick title with a dominant performance. Writing to a C D. C is back in black. That then 19 year old wrecked up 46.8 points in the first run of the final round, a score that no other competitors could surpass. During his interview with NBC after the victory, White broke down, unable to hold back his tears to sports star. In addition to owning the Olympic snowboarding crown, White is also a champion skateboarder who claimed a skateboard vertical title at the 2000 and seven Summer X Games, making him the first athlete ever to win summer and winter X Game titles. Wild Sean SP White skates professionally in the summer, leaving him roughly six months in the snow each year. That makes his achievements and snowboarding and skateboarding all the more impressive and that White didn't win his first X Games title until 2000 and seven. His skateboarding career has long been ordained for greatness. He first started skateboarding with the legendary Tony Hawk at age nine in the spring of 2009. Red Bull, one of Skwy TS principal sponsors, built him a private half pipe, complete with foam pit at Silverton Mountain in southwestern Colorado. Dubbed Project X, the pipe was built on the back side of a mountain in an inconspicuous avalanche shoot, reachable only by helicopter and snowmobile. There, it took quite all of three days to land, a trick that would come to dominate the snowboard chatter over the summer and beyond. The double cork. The game changing maneuver involves two off axes, rotations or diagonal flips, and that the season's opening world Cup event in New Zealand and August. Why debuted back to back? Double Cork Spends in roots victory. The first of those double quirks was a cab 10 80 sailfish, meaning that while white was flipping twice diagonally, he was also executing three full spins and grabbing aboard at his back. Hell EJ, Why was born with a heart defect called tetralogy of fellow, which his website describes as a series of heart malformations, the heart defect required to major surgeries at a young age. As reported in USA Today. He was also severely Bo Lake it early in his childhood and had to wear corrective leg braces at night. However, neither maladies stopped White from trying snowboarding at age six with the assistance of his father, Roger. The entire white family has since taken up snowboarding, with Kathy, his mom being the last to learn. And that concludes this episode of Heart to Heart with Anna Ah, help you enjoy today's episode as much as I have. I love how Sean, Alex, Victoria and Mark have all led the kind of lives that they wanted to lead without being defined by their heart defects. They have lead extraordinary lives because they've challenged themselves and sought to be the best they can be.

spk_0:   50:47
Thank you for listening today. Please come back next week on Tuesday at noon for a brand new episode that February is Hartmut and hard to Harvard. Anna is going to be featuring a radio show every single day during the month of February 2016. Please find it like us on Facebook. Check out our website heart to heart with anna dot com, and that's where you'll see the schedule for all the shows that will be having in a month of February. Check out our cafe Press City, follow our radio show on LA talk radio and especially on Speaker, because if you can help us get enough followers on streaker that we can petition I heart radio to carry our show. And then people can listen to this show in their colors. So thanks again for listening. We know that congenital heart defects touch people all over the globe. But remember, my friends, you're not alone.

spk_1:   51:39
Thank

spk_2:   51:44
you again for joining us this week. We hope you've been inspired and empowered to become an advocate for the congenital heart defect community heart to heart with Anna, with your host Anna Gorsky, can be heard every Tuesday at 12 noon Eastern time. We'll talk again next week.