Meet WSA Kids With Heart

April Featured Kid - Cuzack Bove


Cuzack Bové is 10 years old and was born with Ventricular Septum Defect (VSD), a hole in the wall separating the two lower chambers of the heart. At birth, he was in the NICU and took Lasix for the first year and a half of his life with cardiologist visits, 3-4 times a month. Read more about our featured Kid With Heart Cuzack.

Kids With Heart is a program that recognizes young local heart and stroke survivors who serve as ambassadors for the American Heart Association and inspiration for us all. Through sharing their story and encouraging others to support Jump Rope and Hoops For Heart, they are helping the American Heart Association build healthier lives, free of cardiovascular disease and stroke. To join Kids With Heart share your story.

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Alaska

Otto Xavier Olson

Otto Xavier OlsonMy name is Otto Xavier Olson and I am 7 years old. I was born with a CHD called Supra TAPVR. I was diagnosed hours after birth. I had a life saving open heart surgery when I was 18 hours old. I was in the hospital for the first two weeks of my life. I am now heart healthy and just like other 7 year olds my age I enjoy school, playing with my friends, boy scouts and riding my bicycle. I had to see my pediatric cardiologist weekly then monthly and then yearly until I was 2 years old and then I was given the all clear for two year visits. I have to eat a healthy diet full of fruits and veggies and heart healthy fats. I drink a lot of water and stay active to keep my special heart strong and healthy. I stay involved in CHD awareness by telling others about my story. I participate in the heart walk and the jump rope for heart to help raise awareness and support for CHD research so I can help other children and families of children born with broken hearts like me.

Otto Xavier OlsonMy name is Otto Xavier Olson and I am 7 years old. I was born with a CHD called Supra TAPVR. I was diagnosed hours after birth. I had a life saving open heart surgery when I was 18 hours old. I was in the hospital for the first two weeks of my life. I am now heart healthy and just like other 7 year olds my age I enjoy school, playing with my friends, boy scouts and riding my bicycle. I had to see my pediatric cardiologist weekly then monthly and then yearly until I was 2 years old and then I was given the all clear for two year visits. I have to eat a healthy diet full of fruits and veggies and heart healthy fats. I drink a lot of water and stay active to keep my special heart strong and healthy. I stay involved in CHD awareness by telling others about my story. I participate in the heart walk and the jump rope for heart to help raise awareness and support for CHD research so I can help other children and families of children born with broken hearts like me.


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Arizona

Austin Lugo

Austin LugoOur son Austin had open heart surgery this past June 2016 at age 8 due to Subaortic Stenosis. He has been watched by a cardiologist since the age of 5 due to his pediatrician hearing a heart murmur at a wellness exam. He developed a growth/membrane in his chamber that leads to the lungs. This past year the growth grew causing leaking of the valve. After having open heart surgery 10 days later he went into congestive heart failure. He is now on the path of a 100% recovery. We tell him daily his heart is so big with love and kindness that it needed to be released to share with others!

Austin LugoOur son Austin had open heart surgery this past June 2016 at age 8 due to Subaortic Stenosis. He has been watched by a cardiologist since the age of 5 due to his pediatrician hearing a heart murmur at a wellness exam. He developed a growth/membrane in his chamber that leads to the lungs. This past year the growth grew causing leaking of the valve. After having open heart surgery 10 days later he went into congestive heart failure. He is now on the path of a 100% recovery. We tell him daily his heart is so big with love and kindness that it needed to be released to share with others!

Brody Villaman 01My name is Brody and I am almost 9 years old and am in the 3rd grade. When I was in my moms belly they diagnosed me with Tetralogy of Fallot, which means I would be born with 4 things wrong with my heart. When I was 6 months old my cardiologist told my mom and dad that it was time to repair my heart and I would need surgery. On July 2, 2008 at only 7 months old I had my first open heart surgery. My parents always tell me how strong I was and how special my heart is! Now I have a cool scar that reminds me every day how strong and brave I have to be.

Currently, I am very healthy and haven't had any problems but I know that in the future I'm going to need more surgeries. This is very scary to me however I know I will be brave. Now every year my school does "Jump Rope for Heart" to help raise money for Heart research and to help other kids like me! In the past two years that I've participated I have raised the most money out of my entire kinder-8th grade school!! I am proud to be a Heart Warrior and want other kids who are like me to be proud too!

Brooke Mehlberg Brooke and her twin sister were born on June 5, 2008. After only being a day old, the hospital pediatrician came into our room to do their evaluation on the twins and noticed Brooke had a murmur. The next morning, she was undergoing tests and echos and her VSD (Ventrical Septal Defect) came to light. She wasn't even 2 days old! The cardiologist at the hospital indicated that it would be wise for us to follow up with Children s Hospital. One month after we were released from the hospital we had our first follow up appointment with the cardiologist. He indicated that the hole in Brooke's heart was not closing and surgery would be inevitable. Brooke was not  gaining the weight or growing at the rate that her twin sister Averi was, so the doctors were concerned that her condition was starting to alter her growth and progressions.

On November 25, 2008, Brooke was checked into Phoenix Children's Hospital to have her open heart surgery performed. After 5 long hours, the doctors indicated that she was out of surgery and in recovery. Brooke is a fighter and was trying everything in her power to remove her own lines (at just 5 months old!). The doctors even mentioned during their rounds that they had never seen an infant recover from surgery so fast. We spend that Thanksgiving in the hospital with her and she was released the day after Thanksgiving.

Today she is a fun filled, vibrant 7 year old. She enjoys gymnastics and playing on an all girls football team, with absolutely no restrictions. She does have to continue with her yearly check-ups, but so far has been good!

Carson Hansen My name is Carson Hansen. I am a 5 year old boy who was born with a Congenital Heart Disease (CHD) known as Transposition of the Great Arteries. This means when I was born I was not able to get oxygenated blood to my body. Because of my CHD I required life-saving, open-heart surgery when I was just 4 days old. My heart is still different than most because it pumps the blood in reverse of the way a normal heart pumps blood because I have special heart I need to see my Cardiologist once a year to make sure my heart is still doing a good job.
 
Today I am an active boy who loves to play baseball, soccer and flag football. Although I am not allowed to be a catcher on my baseball team due to my heart I can still play all the other positions and I love to play 1st base! I work hard to keep my heart healthy by eating foods that are good for me, getting lots of exercise and seeing my "heart" doctor every year.
 
My wish is that with each year doctors are able to learn more about CHD through research and funding allowing them to help kids like me live a long and healthy life.

Devonee Farrington I was 5 months old when my family and I found out I had a coartation of my aorta, and a biscupid valve in my aorta as well. I would require surgery to fix my coartation. I was 10 months old when I had surgery. I now see my cardiologist every year for a checkup.I love to run and play sports.

Jade Grijalva 01My daughter Jade is 9yrs old and was born with Pulmonary Valve Stenosis. Although it's considered mild, she has to follow-up yearly with her Cardiologist. Jade also has type 1 diabetes. Jade is very active and maintains good eating habits in order to be the best she can possibly be. She loves fruit and vegetables, especially in the summer.
 
Jade participated in an elementary basketball tournament and was the only 4th grader amongst 4th and 5th grades that served as starters for the team. She assisted her team in winning the Championship and in being undefeated. Jade is also in the Basketball's Winter League tournament in our town and trains daily at home and with her team. She loves to jump on her pogo stick and pretty much nothing stops her from always doing what she loves. She's a straight-A student and was named Student of the Month the first month of school. She's a Student Council Representative at her school and sells concessions after school to help her school raise money.

She always loves helping others in need or with disabilities. She currently assists and autistic classmate who seems to work best when he sits next to her while doing his work. She clarifies work he doesn't understand and helps him calm down when he has an episode. She's also a member of a type 1 diabetes support group in our town. She helps raise awareness and funds for the 5k JDRF Walk every year.

When Kyle was born on June 7, 2007, he had to stay in a special part of the hospital called the NICU due to some trouble breathing. When he was five days old a nurse noticed something different when she listened to Kyle’s heart. The doctors ran a special test called an echocardiogram, and they found that Kyle had a condition called Coarctation of the Aorta or CoA. It means that the aortic artery going away from the heart is smaller than it should be or it is twisted, so blood can’t flow through properly.

Kyle had to be moved to a special hospital by helicopter to have a surgery at six days old. When he was eight days old, Kyle had heart surgery that lasted over four hours. Kyle’s mom and dad were told that he would have to stay in the hospital for the next month. But, he got better so quickly, they were able to take him home less than a week later!

Kyle has regular checkups, and he is doing great! He still has his surgery scars on the left side of his back.

Madison Stahl My name is Maddy Stahl, and I am 8 years old. I was born with a hole in my heart called atrial septal defect (ASD). My heart also beats too fast sometimes, so on March 15, 2013, I had a procedure called a catheter ablation to fix my heart rhythm. Eventually, I had to have open heart surgery to repair the hole, too. After both operations, I needed a pacemaker to help my heart continue to beat normally. I get my pacemaker checked every three months and my doctor says the batteries will need to be changed about every six years. I am now just a regular kid that loves to play, run and draw. I am super healthy and have an extra cool heart.


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California

Cuzack Bové

Cuzack BoveMeet Cuzack Bové. Cuzack has a congenital heart defect called VSD, Ventricular Septum Defect. At birth, he was in the NICU and took Lasix for the first year and a half of his life with cardiologist visits, 3 to 4 times a month. Along with this heart defect he has had respiratory infections which kept him back and forth from the hospital regularly, at least 3 times a month. He was also later diagnosed with Asthma.

Cuzack is now 10 years old and since he was 6 years old, he's been going to a camp with other children with heart disease called Camp Del Corazon. He learns about other kids suffering as well. He has a passion for soccer and even with his heart condition and asthma he loves to play and has been playing with AYSO since he was 4 years old.

His heart is doing much better and as of now it looks like he will not need surgery. He does get sick more than most kids his age but he's a fighter and all his friends know and support him. He wants to be an advocate for kids with heart conditions and help educate others. Jump Rope for Heart is a cause he is passionate about and this year Cuzack raised more money alone than the whole school goal combined. He is also making and selling rainbow looms for $2 with part of the proceeds going back the American Heart Association. Way to go Cuzack!

Cuzack BoveMeet Cuzack Bové. Cuzack has a congenital heart defect called VSD, Ventricular Septum Defect. At birth, he was in the NICU and took Lasix for the first year and a half of his life with cardiologist visits, 3 to 4 times a month. Along with this heart defect he has had respiratory infections which kept him back and forth from the hospital regularly, at least 3 times a month. He was also later diagnosed with Asthma.

Cuzack is now 10 years old and since he was 6 years old, he's been going to a camp with other children with heart disease called Camp Del Corazon. He learns about other kids suffering as well. He has a passion for soccer and even with his heart condition and asthma he loves to play and has been playing with AYSO since he was 4 years old.

His heart is doing much better and as of now it looks like he will not need surgery. He does get sick more than most kids his age but he's a fighter and all his friends know and support him. He wants to be an advocate for kids with heart conditions and help educate others. Jump Rope for Heart is a cause he is passionate about and this year Cuzack raised more money alone than the whole school goal combined. He is also making and selling rainbow looms for $2 with part of the proceeds going back the American Heart Association. Way to go Cuzack!

Alivia GardnerMeet Alivia Gardner. Alivia is 5 years old now however, was born with Hypoplastic left heart syndrome; meaning she was born missing the left side of her heart. Luckily her mom and doctors knew this before Alivia was born to take measures to keep her as healthy as possible. She’s had 4 open heart surgeries and 9 cardiac catheterization.
 
Alivia’s favorite thing to do is color and paint. She likes to use watercolors and paints many pictures for her mom and dad. Her parents know firsthand what the American Heart Association has done for her and her family as well as witnessed the research done to help save little hearts like hers.

By participating in Jump Rope and Hoops for Heart Alivia has helped bring awareness to the students, parents and teachers at her school of all the different ways they can help kids with heart defects.

Annabelle ProvisorTwelve hours after Anabelle Provisor was born, a nurse’s assistant noticed she was having trouble nursing. “She would latch on, but was soon sleepy and lethargic,” recalled Arlene Provisor, Anabelle’s mom. A pulse oximetry reading – a diagnostic test mandated by most states for all newborns – showed Anabelle’s oxygen levels were low, and she was admitted to the neonatal intensive care unit.
 
Arlene and her husband Bruce weren’t able to see their newborn daughter until a few hours later. They found her intubated and hooked up to several I.V. lines and machines, as doctors tried to discover what was wrong.

"We were very emotional," she said.

Tests revealed Anabelle was born with a critical congenital heart defect in which the pulmonary artery and aorta are reversed, called d-transposition of the great arteries. Instead of oxygen-rich blood going from the lungs to the rest of the body, Anabelle's heart was sending it back to the lungs. 
You can read more of Anabelle's story here.

Bailey Beasley My name is Bailey and I am 8 years old. I live with my mommy, daddy and two dogs. I was born two months early, because my heart stopped beating. When I was two months old I had a very bad seizure and the doctors found that I had tachycardia and a hole in my heart. I spent a week in the hospital and then when I got out I started to go to Children's hospital in Oakland CA.

The doctor told me that my heart beats faster than others. When I was 4 years old my heart doctor cleared me and told me to come visit him if I started to feel bad again. I know I am lucky because I know things could have been worse. With my many visits to the doctor's office I see many children who had to have surgery and go though many struggles and always have a smile in their faces.

When I was 5 almost 6, my mom had a stroke. I called 911 because she told me to. I was not scared because I knew the doctors would make her better like they made me better and they did. Now I am 8 almost 9 and my mom has 65% use of her leg and arm now. I am just grateful for every day we are all here in this earth. I know life is special and we all must say how much we all mean to each other because you never know what can happen. I think through all of the ups and downs, what I learned the most is just be kind to each other and smile because it could be worse. I appreciate that I can run with my dogs and friends and that my mommy is still here. My wish for the children who go through heart issues is, to stay strong and just breathe. Enjoy every day you have because life is short and we all need to make memories.

Brandon CalvertEveryday Brandon wonders if his Implantable Cardioverter Defibrillator (ICD) will shock him to maintain a stable heartbeat.

He has known about his condition, hypertrophic cardiomyopathy, where the muscle of the heart has been thickened, ever since he was two years old. As he reached young adulthood Brandon began to find out what kinds of problems occurred with his condition. Brandon’s heart would beat too fast out of nowhere, creating uncontrollable arrhythmia. Soon after this started happening, Brandon received an ICD implant that, if his heart started to beat uncontrollably, would shock him back to a normal rhythm. Only a week after the implant was put in place, it saved his life in the middle of the night.

“I know how hard fighting heart disease can be because it is an everyday struggle, and that is why I see no better reason to spread awareness and share my story,” says Brandon, who is currently enjoying his freshman year of college in Southern California.

Caden McCulloch 1Hi! My name is Caden and I am 7 years old. I love to ride my bike, swim, and play with friends. Doctors had to fix my heart when I was a baby and again when I was four years old. I am so happy to be doing well now and to be able to run and play like normal kids.

Caleb Peltier At three days old, Caleb was rushed to the hospital where it was discovered that he had critical congenital heart disease (CCHD). His organs were shutting down...he was dying.

Doctors were able to stabilize him for heart surgery at two weeks old and save his life.

Caleb was alive and on the road to recovery. He was out of the hospital in about 9 days. It has been a long road, including another open heart surgery and a lot of doctor appointments. Today, Caleb is a healthy, playful 3-year old. Doctors hope that he will never need another surgical correction and will be able to live a long, healthy, normal life. Caleb’s family is grateful for the work of the American Heart Association and the outstanding donors that have made their work possible. If it weren’t for this research and medical breakthroughs funded by the association, Caleb would not be alive.

While much research has been funded, more needs to be done to ensure that our loved ones are safeguarded from this deadly and debilitating killer. Caleb and his family invite you to think about those that you love so dearly in your life and what you would do for more time with them. His family encourages you to fund life-saving research by supporting the American Heart Association.

Cash Scharton Meet Cash, Age 7
"Before I was born, the doctors told my mom and dad that I had a heart condition called narrowing of the pulmonary valve. I was going to be fine, but I was going to need to visit a cardiologist a lot my first year of life. I’m not the only one in my family who has a special heart — my dad has the same special heart as me. He had surgery when he was 15 years old to repair his pulmonary valve. My cardiologist has compared my charts to my dad's and he seems to think I will never have to have surgery. I still visit my cardiologist at least once a year. I also have to eat right and get plenty of exercise and rest. Having a special heart does not slow me down. I play soccer, basketball and baseball and I love to ride my bike and skateboard. I’m excited that my heart is doing very well. I wish that all kids could have the same outcome as me."

Charlie SkeltonAt 22 weeks gestation we found out that our youngest daughter, Charlie, would be born with a congenital heart defect. Later she was diagnosed with hypo-plastic left heart syndrome, meaning she was missing the left side of her heart.

At just 6 days old she had her first of 3 required open heart surgeries. She was named the "rock star" after her first open heart surgery, coming home at just 11 days post op, which is almost unheard of. However we were not so lucky with her second surgery.

After being admitted during her pre-op appointment the day before Thanksgiving 2014, our life got turned upside down as we watched our 5 month old flat line, get blood clots, just 10 days before her scheduled second open heart surgery and ultimately also needing a pacemaker. We were lucky as we got released just days before Christmas, but as we were being discharged her doctor informed us that her left pulmonary artery was not working right and in 6 weeks we would have to come back to have a stent place via catherization procedure, and if that worked we could avoid an additional open heart surgery. Luckily it did but every 6 months we have to have a cath procedure in order to keep ballooning the stent to continue to grow with her and hopefully get her prepared for her next required open heart surgery at 3 years old.
 
As of today Charlie is happy, the light of our lives and always smiling at something! With over 21K followers on Hearts for Charlie, her Facebook page, we have been blessed to be surrounded by love and support from all over the world. Last year we published a children's book series called Charlie the Courageous about a little girl who finds strength through her heart scar and teaches children how to embrace each others differences.
 
Charlie's next open heart surgery is scheduled for July 2017, so we are living every day in the moment, relying on our faith and trusting in the path The Lord is guiding us on.

Davey Pricket
Davey Jean Prickett was born at Community Regional Medical Center via C-section on December 23, 2013 at 6:26 pm. She weighed 6 lbs, 14 oz, and was 18” long. We first learned that our unborn baby girl had a problem with her heart and would need open heart surgery shortly after being born during a routine 30 week checkup and ultra sound. Like most people, the terms Tetralogy of Fallot and 22q11.2 deletion syndrome were completely foreign to us. She also had a secondary heart defect called absent pulmonary valve syndrome in which her pulmonary valve didn’t form correctly. We had no idea what to think or feel. One minute we are going in for a normal checkup and the next we are talking about, and planning out her open heart surgery before we have even had her.

Upon birth, she was immediately transferred to Valley Children’s hospital where we had planned to stay until her surgery, which we were told would most likely be within the first 10 days of her life. But Davey was, and continues to be a fighter. Shockingly, she was maintaining oxygen levels at 100% despite her defect. Because of this, we were allowed to go home after 4 days in the PICU and spend some time with our new baby girl.

Her first open heart surgery happened March 10, 2014, when she was only 11 weeks old. Davey’s surgery was a success and the amazing cardiac surgeons at Valley Children’s were able to work miracles on her heart. We spent 28 days in the hospital after her surgery. Her little body was just so fragile. But, like when she was born, Davey fought like the warrior she is and we were able to bring her home!
 
Davey is now almost 3 years old and her favorite things to do are play, sing, dance, be outside and give hugs. She is currently living without a pulmonary valve. The long term effects of that could be very dangerous for her. She will need another surgery at some point to fix this problem, but only Davey’s body can tell us when that time will be. She will have to have biannual EKGs to make sure her heart is not in any distress and have regular follow-ups with her pediatrician and cardiologist. With hard work and a lot of love and determination, we are proud to say that today Davey is overall a “healthy” little girl.

Elijah Presa My name is Elijah Presa and I live in Orange, California. I was born premature at only 23 weeks, weighing 1 lb, 6 ounces, and was only 11 inches long. I had a Patent Ductus Artery in my heart. Doctors performed surgery on me at a week old. I stayed for 5 months in NICU. I am a healthy 6-year old now.

Ethan Potts Meet Ethan, Age 14
“Hi! My name is Ethan and I was born with 3 congenital heart defects. When I was younger, I had to go to the emergency room and stay in the hospital a lot. I couldn’t be very physically active and spent most of my time watching other kids play – it wasn’t much fun. But the AHA helped change that! Thanks to medical procedures, first pioneered by Dr. Glenn, the AHA’s first Surgeon President, I’ve been able to have several surgeries and I can do way more – like surf, skateboard and snowboard! Even though things are a lot better for me, I still have a few problems with my heart. I’m counting on research funded by grants from the American Heart Association to help me again! 

Jaclyn Hastings My name is Jaclyn, I was born in China with tetralogy of fallot and a hole in my heart. When I was 3 yrs old I had surgery to fix the hole. During surgery I had a stroke and now have cerebral palsy. In December of 2009 I was adopted by my family. I now have a sister, mom & dad. After coming to America I have seen many doctors, all  who have helped me to understand what I need to do to have the best life possible. I was born right handed, I can't use that hand anymore. I can use my left hand & am learning to use my right hand as a helper. I still have a hard time learning new things, but my family & teachers help me a lot. Most of the time I'm happy, sometimes I get frustrated, but I keep working & things get better. I will have to have another surgery when I get bigger. I can swim & run. I love playing with my friends.

Lindsey Schmitt
“Hi, I am Lindsey Nicole Schmitt. I am 13 years old and in 8th grade. At the age of 9, I was diagnosed with Wolff-Parkinson-White Syndrome and Atrial Tachycardia Arrhythmias. I underwent a surgery called Catheter Ablation at Children’s Hospital in Seattle, but sadly, the surgery was unsuccessful. I am currently on two heart medications to keep my heart in a normal rhythm which limits some of my physical activities, but that doesn't stop me from cheering & dancing!”

Michael and Grace Elhers At just a few hours-old, Michael stopped breathing. As the doctors worked to figure out why, they discovered that Michael was born with a heart defect.

Just 37 hours into Michael's young life and he was already having his first open heart surgery. His mom, dad and big sister Grace stayed by his side in the Neonatal Intensive Care Unit (NICU) letting him know how much he was loved and that he could fight to survive.

Michael made it through his first open heart surgery as well as several more surgeries and hospital visits during the first few years of his life. He still visits the doctor for regular EKGs and echocardiograms, but that doesn't slow him down! Michael, or "Miracle Mike", likes to run around, play super heros, take karate classes and everything else that four year-old boys like to do. The Ehlers are thankful for the research done by the American Heart Association that helps heal special hearts like Mike's.

Natalie WarsavskyMy name is Natalie and I am 7 years old. I have a twin brother and four dogs. I was born with a heart defect that was detected when I was 4 months old. I was born with a hole in my heart as well as PAPVR (partial anomalous pulmonary venous return). My parents were told that I would need open heart surgery to correct this defect by the age of 5.

After my first birthday the doctors decided it was time for surgery because I was not growing or gaining weight. When I was 15 months old I had surgery at Cedars Sinai Hospital in Los Angeles, the same hospital I was born in. Although I do not remember the surgery I know it was scary for my mom and dad. After surgery I continued to see my cardiologist for routine check ups. Unfortunately as a result of the surgery, when they cracked by ribcage, I had a abnormality in my chest known as pectus carinatum. After a year of physical therapy I finally began to wear a chest brace. I had to wear it all the time, to sleep and to school. My pre-school and kindergarten teachers would explain it to the other kids in my class so I would not feel uncomfortable.

I am now in 2nd grade. I no longer wear the brace and I am healthy and very active. I play soccer and do karate. I continue to see my cardiologist every year. I sometimes feel uncomfortable when kids ask me about my scar on my chest and I don't always know what to say. However, I am very lucky to have a healthy heart and my parents always tell me I have a special heart. I want to help other kids and want kids to be healthy and exercise.

Rachel Salas At only two years old, Rachel’s primary doctor recommended she see a cardiologist after detecting a possible heart murmur. The cardiologist reassured the family that the murmur was nothing to worry about and asked them to bring Rachel back in a few months for an echocardiogram.

Not long after her visit to the cardiologist, Rachel was injured by a bookshelf and was rushed to the emergency room, where the ER doctor became concerned about her heart and requested further testing. After thorough testing, the doctor’s explained to Rachel’s family the urgency of her heart condition and suggested that she visit a cardiologist right away. Rachel and her family had to consult with multiple cardiologists before receiving the diagnosis of mitral valve stenosis, (a condition that causes a decrease in blood flow to the left side of the heart, causing the right side to work harder). At the time Rachel’s doctors could not agree on a course of care and as they deliberated she became weaker, stopped growing and was frequently tired. As time passed one doctor warned the family Rachel may not make it to the age of 3 if something was not done soon. The family made a life altering decision. They picked up their life and moved to San Diego so that Rachel could receive treatment at Rady Children’s Hospital. Much to the family’s relief, the cardiologists at Rady was able to perform a mitral valve replacement procedure on Rachel in 2010. The surgery was a success and with monitoring and medication Rachel is now a happy, healthy 9 year old.


Sofia Montoya 01

Sofia Montoya had been practicing her favorite song for her elementary school’s talent show April 22. She sang Rachel Platten’s “Fight Song” over and over again with her mother, Shawna. But Sofia didn’t make it to the show. The bubbly, bright third-grader at Farallone View Elementary in Montara, California, was on the playground on April 18. She’d been playing on a playscape but sat down on the ground, told a classmate she felt “weird,” and fell backward. You can read more about Sofia's journey here.
 

Willa KoehlerMy name is Willa I am in the 2nd grade. I live with my mom and my dad and my dog Louie. I was born with a special heart. It is called Double Outlet Right Ventricle. I had three open-heart surgeries. I spent a lot of time in the hospital and I was scared at first but after the surgeries I was fine. My parents always call me a very, very brave kid. I’ve had a lot of shots and they don’t bother me anymore. I used to not be able to run because I would get tired a lot. But now I can run just like all the other kids. My doctor says one day I will probably need a pacemaker because I have heart arrhythmia.


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Hawaii

Ihilani Hatori

Ihilani Hatori My name is Ihilani Hatori but my family calls me Bonkie. I live with my mom, dad, 2 brothers and 2 sisters in Mt. View, Hawaii. My heart needs checking up once every month to be sure it is working right. On August 17, 2011, my sister passed away from a heart problem. At the time, we didn't know why she passed and doctors couldn't find any reason in the autopsies, so they said, her heart stopped working. She was healthy, funny, loving and the best sister ever. She took care of me, played with me and made me laugh. I love and miss my sister Michiko Hatori. This year on April 6, she would have been 22 years old. After all this, we all got tested and found out that my 2 brothers and I have the same problem with our hearts but less severe. My older brother who is going to be 13 soon needs to check up a little bit more than my other brother and I, but doctor said he is doing fine and is able to play sports. In fact, we all are. My 2 brothers play football and baseball and I am a cheerleader. My other two sisters do not have any problems with their hearts and they cheer too. My mom knows how important it is to check up and be sure that our hearts are functioning great. She does not want to lose any of us anymore and I am happy to have a mom who cares for us as she does. She is the best and she knows that our lives count.

Ihilani Hatori My name is Ihilani Hatori but my family calls me Bonkie. I live with my mom, dad, 2 brothers and 2 sisters in Mt. View, Hawaii. My heart needs checking up once every month to be sure it is working right. On August 17, 2011, my sister passed away from a heart problem. At the time, we didn't know why she passed and doctors couldn't find any reason in the autopsies, so they said, her heart stopped working. She was healthy, funny, loving and the best sister ever. She took care of me, played with me and made me laugh. I love and miss my sister Michiko Hatori. This year on April 6, she would have been 22 years old. After all this, we all got tested and found out that my 2 brothers and I have the same problem with our hearts but less severe. My older brother who is going to be 13 soon needs to check up a little bit more than my other brother and I, but doctor said he is doing fine and is able to play sports. In fact, we all are. My 2 brothers play football and baseball and I am a cheerleader. My other two sisters do not have any problems with their hearts and they cheer too. My mom knows how important it is to check up and be sure that our hearts are functioning great. She does not want to lose any of us anymore and I am happy to have a mom who cares for us as she does. She is the best and she knows that our lives count.

Kendra Ryan When Kendra was 15 months old she fell ill with a high fever that was resistant to Tylenol. Her lymph nodes in her neck were also swollen so severely that she could not turn her head from side to side and she refused to walk. Her symptoms persisted over the weekend and on the 5th day she woke up with bright red swollen, cracked, and bleeding lips. Her symptoms also included a "Strawberry" tongue and swollen hands and feet. We rushed her to her pediatricians office where he believed right away that she was suffering from Kawaski Disease. He was unable to treat her and she could only be treated at Kapiolani Hospital in Honolulu which was a 45 minute airplane ride away. Kendra's pediatricians suspicions were confirmed, after a plethora of tests over a 24 hour period to rule out all other possibilities, Kendra was treated and diagnosed with Kawasaki Disease. She then began an IV treatment of adult antibodies (IVIG) for 48 hours. Luckily Kendra's pediatrician caught her symptoms early enough and she has no significant damage to her heart. According to the Kawasaki Disease Foundation, "KD is a serious illness characterized by inflammation of blood vessels throughout the body that primarily affects young children and infants. Kawasaki disease is the leading cause of acquired heart disease in children. Without treatment, about 25% of children develop heart disease involving the coronary arteries. Doctors continue to study the long-term outcome of children who do not appear to have coronary involvement". Luckily Kendra was treated early and had no significant damage to her heart. However, she continues to see a specialist regularly to keep a close watch over her heart. KD is rather common in the Hawaiian Islands as opposed to other areas nationally. The reason for this is unknown, and this is what motivates the Ryan family to continue to push for advancements towards testing.

Kyley Fletcher My name is Kyley. I am 11 years old. I was born with a broken heart: coarctation of the Aorta and a bicuspid leaky valve. When I was only 3 months old I ended up in the NICU with respiratory syncytial virus. This is where they found out about my heart.
 
I have had 2 open heart surgeries and 1 balloon up my leg to my aorta while I had RSV so I could survive until I was well enough for surgery.

I still have a leaky valve and they said my Aorta is starting to narrow VERY LITTLE so I only have yearly checkups now. I am trying to stay healthy and heart healthy.


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Idaho

Aidan Jonz

Aidan JonzMy name is Aidan. I am seven years old and live in Hayden with my mom, dad and sister Addison. Like most boys my age I love super heroes and Xbox and Star Wars. I am not like every little boy my age though. You see, when I was born I had holes in my heart. My mom says that I was a very sick little boy for the first couple of months of my life.

When I was 2 months old I went to the big hospital in Spokane (Sacred Heart Children's Hospital) and had surgery to fix the holes in my heart. When I was in surgery, I had a stroke. My mom says a stroke is when you get an ouchie on your brain. My ouchies occurred on the left side of my brain, making the right side of my body a little weaker.
 
I have worked very hard since I was that little baby with holes in his heart and ouchies on his brain. I have had speech therapy and OT and PT. I get extra help in school and therapists come to my house to help me learn there.

I want kids with heart problems or strokes to know that they can do anything. They can be a warrior just like me.

Aidan JonzMy name is Aidan. I am seven years old and live in Hayden with my mom, dad and sister Addison. Like most boys my age I love super heroes and Xbox and Star Wars. I am not like every little boy my age though. You see, when I was born I had holes in my heart. My mom says that I was a very sick little boy for the first couple of months of my life.

When I was 2 months old I went to the big hospital in Spokane (Sacred Heart Children's Hospital) and had surgery to fix the holes in my heart. When I was in surgery, I had a stroke. My mom says a stroke is when you get an ouchie on your brain. My ouchies occurred on the left side of my brain, making the right side of my body a little weaker.
 
I have worked very hard since I was that little baby with holes in his heart and ouchies on his brain. I have had speech therapy and OT and PT. I get extra help in school and therapists come to my house to help me learn there.

I want kids with heart problems or strokes to know that they can do anything. They can be a warrior just like me.

Elias ChristensenHi, my name is Elias. I live at home with my parents and my younger brother. We have dogs and cows, and help my grandpa take care of horses and chickens.

I was born with VACTERL Syndrome that was diagnosed when I was 2 days old. I had a huge hole in the center of my heart called an AV canal (atrial ventricular septal defect). It caused me to have congestive heart failure and I was on many medicines and didn’t grow. When I was 6 months old, I had open heart surgery and they patched the hole and created two valves. Three days later my heart quit beating correctly and a week later I had another open-heart surgery to put in a pacemaker. Then I had to be on oxygen for about 7 months because I developed pulmonary hypertension.

When I was 5 years old, my heart rate dropped and my pacemaker had to be moved to a different spot. I have to check my pacemaker every three months and have other tests every year.

I love to play and be active, but if I have chest pains or start turning blue, I have to stop and rest for a short time. I want everyone to be happy and if they have heart problems I want them to be brave because my uncle always tells me “I am Elias and I am brave.”

Paxton SmithHi my name is Paxton Smith, I live at home with my parents, my three brothers, and my dog.

When I was 7, I got really sick, and had to go to the hospital. While there, I was diagnosed with Kawasaki's disease. This caused my coronary arteries to become enlarged. I had to take different medicines daily, and have heart echocardiogram's every couple weeks.

While it was happening, I felt sad, and didn't think people would want to play with me because I had a bad heart. It was also scary always having tests. Plus I couldn't do anything that would put extra stress on my heart, like a lot of exercise, so it was hard playing with my friends.

After lots of months of tests and medicines, my scan came back clean, my heart had healed! I still have to get yearly tests just to check it, but I am able to do so much more now!

I hope that anybody who has heart problems will feel better, and try to have happy times!

River Blake-RobertsRiver was born with Pulmonary Atresia. Right away, the doctors knew something was different about him. Within the first few hours of his life, he was lifeflighted to our neighboring state and spent 28 days in the hospital. At 9 days old, he had his first heart surgery to have a BT Shunt put into place. River has also suffered 2 mild strokes that affect the right side of his body and mind.

Through all the obstacles he has had to overcome, he still manages to have one of the most clever and witty personalities. He has a love for Sonic the Hedgehog and can tell you endless amounts of facts about his favorite super heroes. River has been a great reminder that anything is possible and to never give up.


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Montana

Aaron Isakson

Aaron IsaksonMeet Aaron Isakson. Aaron was born with a severe congenital heart defect called HLHS. His parents had to move to another state so that a special team of doctors and nurses could work on his heart and save his life. Aaron’s mom says that he had surgeries at 4 days old, 4 months old, and 3 years old. He is now 5 years old and doesn’t really remember the times that he had his surgeries. He is proud of the special scars that are on his chest. They show how brave and strong he is, like Superman, Batman and Spiderman. Aaron loves his hospital and misses his doctors. They take great care of his heart to this day.

Aaron IsaksonMeet Aaron Isakson. Aaron was born with a severe congenital heart defect called HLHS. His parents had to move to another state so that a special team of doctors and nurses could work on his heart and save his life. Aaron’s mom says that he had surgeries at 4 days old, 4 months old, and 3 years old. He is now 5 years old and doesn’t really remember the times that he had his surgeries. He is proud of the special scars that are on his chest. They show how brave and strong he is, like Superman, Batman and Spiderman. Aaron loves his hospital and misses his doctors. They take great care of his heart to this day.

Colter Cross Colter Cross was born on November 17, 2011. He was taken home 24 hours after he was born, he had passed all of the health screenings and was a healthy baby boy. Unfortunately, the hospital had neglected to complete Pulse Oximetry Screening.

Three days later at his first checkup the doctor heard a very loud murmur and chose to check his oxygen levels, which were bad. A normal baby should be above 95% and Colter was at 75%. He immediately made arrangements for us to see a cardiologist. Five hours later Colter's parents received the most terrifying news they have ever heard in their lives. Colter was diagnosed with a severe and rare critical congenital heart defect called Truncus Arteriosus. Without surgery to repair his defect he would die.

At eleven days old Colter underwent open heart surgery at Seattle Children's Hospital that was supposed to take 6-8 hours but, because Colter had suffered a cardiac arrest, it wasn't until fourteen hours later that Colter was stabilized. However he was still surviving minute to minute. During the next two weeks, Colter was barely surviving facing infections and last ditch efforts by the doctors.

Luckily, by the grace of medical research, Colter began to improve and was discharged from the Children's Intensive Care Unit. He remained in the hospital for another month on antibiotic treatment. When Colter was finally able to go home, he had a feeding tube, full-time oxygen and a long road to recovery. His cardiologist said if he didn't improve a heart transplant would be needed.

Happily, Colter is thriving today! He is as crazy as any other two-year old and just recently became medication free. Colter will need at least 3 more open heart surgeries, numerous catheters and constant monitoring throughout his life. His family doesn't worry about the future and enjoys today and the moments we have right now knowing that through research and medicine, Colter can and will have a healthy quality of life. Please help spread the word that nearly 1 out of every 100 births a baby is born with some form of heart disease. Heart disease is the #1 killer of our babies, not to mention that babies are twice more likely to die of a heart disease than all forms of childhood cancer. Heart disease doesn't discriminate; ask for your baby’s oxygen levels to be checked before you leave the hospital. Know the signs--if your baby has a bluish tint to the skin, fingernails or lips, fast breathing, poor feeding, poor weight gain, fatigue, poor circulation and excessive sweating--those are all signs of a possible heart defect.

Isaac ReyesI was born with a congenital heart condition called Tetralogy of Fallot. Soon after I was born, I was flown to a larger hospital where I stayed for a whole month. During that month, I had a heart Cath and open heart surgery to connect my heart to my lungs.

When I was 8 months old, I had to go to Stanford to have the hole in my heart repaired as well as replace the valve and conduit they had put in when I was 2 weeks old. They also rerouted a lot of vessels that supply my lungs with blood from my heart. The surgery took over 9 hours to do!!

I did great for 7 years, but in May of 2016 I had my last open heart surgery to replace the valve and conduit again, since it became too small with how big I had gotten!
 
I have been blessed with a great family and lots of friends that pray for me each time I have a heart Cath or surgery. I can now run and play without getting too tired and I am proud of my "zipper" on my chest! I keep my heart healthy with exercise, eating healthy, and drinking lots of water.
 
I'm grateful for all of the doctors and nurses that cared for me and that help me keep my heart healthy!


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Nevada

Alexia Torres

Alexia TorresMy name is Alexia Torres. I am 8 years old and I am a survivor of congenital heart disease. I was just a fetus when my mother found out about my condition. At first doctors told her it was life threatening because I had a lot of fluid backed up in my heart. As months went on and I grew in my mommy's tummy my heart made significant changes and was told that I would make it to full term. I was born months later weighing at 6 pounds 6 ounces 19 inches long. I was your average newborn. Doctors checked my vitals to make sure if I needed to be rushed into surgery for my heart repair. Fortunately my oxygen and everything else they checked for was 100 %. I stayed in the hospital for 5 days not because of my heart but for having jaundice. My parents took me home after a week in the hospital just as if nothing was wrong.

Fast forwarding to six months old it was about that time my cardiologist felt it was needed to do a full repair for my tetrology of fallot. My surgery went great! My hole was patched and I was given a shunt for my pulmonary aorta. I spent 5 days in pediatric ICU where doctors were amazed at how fast I recovered. I was a super baby! Child hood was normal and still is but at 8 years old i still have obstacles to over come. June of 2016 my mother was told I needed to have a valve put in to stop leakage in my heart. My surgery was done via catheter, it was a one night stay easy peasy.

Now I have this valve I should be more of energy and extend my limits of things I can do but we will continue for see. I still get tired very fast and I know I have a long road ahead of me. My parents always uplift me and tell me I can do anything I set my mind to just as long as I know my limits. I take aspirin on a daily basis to keep from forming bloods clots so I don't risk infection of my valve. It is not great all the time because I bleed a lot if I cut myself on something or I tend to bruise easily now. All of that is no fun but it isn't a big deal.
 
I get to do plenty of things like other kids with normal hearts. Kids with congenital heart disease are warriors and survivors. We get to wear a zipper all the time!

Alexia TorresMy name is Alexia Torres. I am 8 years old and I am a survivor of congenital heart disease. I was just a fetus when my mother found out about my condition. At first doctors told her it was life threatening because I had a lot of fluid backed up in my heart. As months went on and I grew in my mommy's tummy my heart made significant changes and was told that I would make it to full term. I was born months later weighing at 6 pounds 6 ounces 19 inches long. I was your average newborn. Doctors checked my vitals to make sure if I needed to be rushed into surgery for my heart repair. Fortunately my oxygen and everything else they checked for was 100 %. I stayed in the hospital for 5 days not because of my heart but for having jaundice. My parents took me home after a week in the hospital just as if nothing was wrong.

Fast forwarding to six months old it was about that time my cardiologist felt it was needed to do a full repair for my tetrology of fallot. My surgery went great! My hole was patched and I was given a shunt for my pulmonary aorta. I spent 5 days in pediatric ICU where doctors were amazed at how fast I recovered. I was a super baby! Child hood was normal and still is but at 8 years old i still have obstacles to over come. June of 2016 my mother was told I needed to have a valve put in to stop leakage in my heart. My surgery was done via catheter, it was a one night stay easy peasy.

Now I have this valve I should be more of energy and extend my limits of things I can do but we will continue for see. I still get tired very fast and I know I have a long road ahead of me. My parents always uplift me and tell me I can do anything I set my mind to just as long as I know my limits. I take aspirin on a daily basis to keep from forming bloods clots so I don't risk infection of my valve. It is not great all the time because I bleed a lot if I cut myself on something or I tend to bruise easily now. All of that is no fun but it isn't a big deal.
 
I get to do plenty of things like other kids with normal hearts. Kids with congenital heart disease are warriors and survivors. We get to wear a zipper all the time!

Brody Congioloso My name is Brody and I am 11 years old. I was born in 2004 and the doctors told my mom when I was 10 days old that I had pulmonary stenosis and aortic insufficiency. My mom was already a "heart mom" because my brother (Dakota - 13) also has pulmonary stenosis. When I was 4 months old I had to have a cardiac catheterization, followed by emergency-open heart surgery. Since then I have had to have 4 more cardiac catheterizations and last year on March 13, 2015 I had another open-heart surgery to replace my aortic valve. It was really scary for me because I was afraid I would die. I had some anxiety for a few weeks before surgery and stayed home to be close to my mom. After surgery I stopped breathing and gave all the doctors a big scare, but they were great and saved my life. Five days after surgery I went home and I've been recovering well ever since. Just last week I saw my doctor again and he said my heart is perfect and he took me off the aspirin and blood pressure medicine. He even let me go for a ride on a roller coaster that I really wanted to ride! I will have to have more surgery in the future, but it really scares me to think about it so I try not to. I don't want other kids to be scared or to hurt or get pokes or have to have their heart opened up. My mom works with the AHA here in Las Vegas and I like to talk to people and tell them if they help the AHA, they're really helping kids like me. My heart is broken, but it's still beating and I'm pretty tough because of what I've been through!

Devin AllenMy name is Devin, and I have 2 brothers one older and one younger. A month before I was born, doctors told my mommy that I had 3 holes in my heart. After I was born the doctors then told my mommy and daddy that I had Down Syndrome. I stayed in the hospital for a month after I was born, and when I turned 4 months old the doctors decided it was time to do open heart surgery to close the holes in my heart. Ever since my surgery I haven't had any more issues. I'm growing big and strong and I love school and batman. I am also taking part in the special Olympics and hope all the money I raise helps to save lives so they too can grow as big and strong as me.


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Oregon

Alice Arnold

Alice ArnoldAlice was born with a CHD called AVSD (Atrial Ventricular Septal Defect) meaning she had 1 big hole in her heart leading from the top to the bottom. She had surgery at 2 months old to repair it and a pacemaker placed about 2 weeks after that. During the first 4 years, she had a normal life, played had friends, went to play dates and just about anything a 4 year old would do. Shortly before Alice turned 5 she collapsed during drop off at preschool. She was taken by ambulance to Doernbecher where they figured out her pacemaker lead had fractured, and they needed to repair it fast. During this time, Alice coded and they needed to do 4 rounds of CPR to bring her back. All the CPR messed with the natural rhythm of her heart and created other problems.

Despite all this, Alice is now and amazing and vibrant 6 year old.

Alice ArnoldAlice was born with a CHD called AVSD (Atrial Ventricular Septal Defect) meaning she had 1 big hole in her heart leading from the top to the bottom. She had surgery at 2 months old to repair it and a pacemaker placed about 2 weeks after that. During the first 4 years, she had a normal life, played had friends, went to play dates and just about anything a 4 year old would do. Shortly before Alice turned 5 she collapsed during drop off at preschool. She was taken by ambulance to Doernbecher where they figured out her pacemaker lead had fractured, and they needed to repair it fast. During this time, Alice coded and they needed to do 4 rounds of CPR to bring her back. All the CPR messed with the natural rhythm of her heart and created other problems.

Despite all this, Alice is now and amazing and vibrant 6 year old.

Lucy BallantiMy name is Lucy. I am 9 years old and I live in Beaverton with my Mom, Dad, my sister Maryn and my mischievous dog Loki.

When I was six months old my mom took me to the doctor because I was really small and I cried a lot, and when I was crying my lips were kind of blue. The doctors said I had Tetrallogy of Fallot - my heart had a hole in it and the valve going to my lungs was too small so my body didn't get enough oxygen. The doctors said I must have had some really bad headaches which made me cry a lot!

I had surgery to fix the hole in my heart when I was six months old. My mom said I felt better right away! I still have to go to the doctor every year to check my heart - I don't like the EKG because it hurts when they take the electrode stickers off - but my heart is doing well.

I like to play soccer to keep healthy and I eat fruit (and vegetables when my mom makes me!). Jump Rope for Heart is really fun and I hope everyone does it and raises money to help other kids with heart defects.

Miranda CaseMy name is Miranda and I'm 10 years old. I live at my home with my Mom, Dad and sister Brittany. We have a dog named Maizee. I was born with Hypoplastic Left Heart Syndrome, which means I'm missing the left side of my heart. There are three surgeries for most HLHS kids. I had the Norword at 7 days old, six months old the Bi- Directional Glenn and at 4.5 I had the fontan. At age six I started having problems and developed Protien Losing Entropathy. I had another open heart surgery to correct the problem.
 
I feel fine most days. Sometimes I'm tired or it takes me longer to do things. I love to be active. I have tried dancing, gymnastics, softball and swimming. I love to roller skate, do crafts and paint. I stay very active, I'm a girl scout.
 
I pray all CHD kids have the same results as I did. I live life to the fullest and take one day at a time.

Sina Anderson Sina's congenital heart defect was discovered when he was only 6 months old. Her defect is called Atrial Septal Defect (ASD), which is the hole in the heart wall that separates the upper chambers of the heart.

Sina received her live-saving heart surgery in 2012 at just 2 years old and is a happy healthy little girl today.

Sina's family is incredibly grateful for their community of friends and family. They would like to thank everyone from the bottom of their hearts for their support, well wishes, hugs, and prayers. 

You can read more about Sina's journey here.

Sutton Haggren My name is Sutton Haggren, and I am five years old. My heart defect was detected in utero, and so I was carefully monitored throughout my mom's pregnancy to measure the growth of my heart. The doctors thought I had hypoplastic left heart syndrome and would need at least three open heart surgeries. When I was born, I was taken straight to ICU, where I was closely watched. I didn't show any signs of distress and my heart was working for the time being. When I was 8 days old I had my first heart catheter, and the surgeon could see exactly what needed to be fixed. My aortic arch was too narrow, and needed to be opened up and a patch put in. I started to get very sick in the next few days, and it was obvious to my doctors I needed open heart surgery soon. When I was 14 days old, I was wheeled away to surgery, and after about 8 hours of surgery my parents finally got to see me, with my new scar that I will have forever. Surgery isn't a cure, it is only a fix. I see a cardiologist every year now and I have developed two other issues, a sub aortic membrane and my aortic arch has started to re narrow again. I will need at least two more surgeries. I know that I have to take special care of myself and be especially heart healthy. I try to eat better and I love to run! I do have restrictions, I can't lift heavy things, and I won't ever be able to wrestle. My scar doesn't define me, I love all sports, and my hip hop class, and I love kindergarten. This was my first year doing Jump Rope for Heart, and it made me feel special. Heart defects are the number one birth defect, but not many people know much about them. I want everyone to know that I am the same as all other kids, just with a cool scar!


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Utah

Lucas Rowbury

Lucas Rowbury My name is Lucas. I am the oldest of 5 kids, I have 3 brothers and 1 sister. I love Legos, reading and playing basketball with my friends. When I was born I immediately turned blue. It was determined that I would be flown to Primary Children's Medical Center in Salt Lake from Rexburg, Idaho (where I was born). At PCMC the doctors told my parents that I had Transposition of the Great Arteries (TGA). At 6 days old I had open heart surgery, an arterial switch, to fix my heart. I was in the hospital for almost a month. I went home and had a feeding tube, a picc line and was on lots of medicines. I am really lucky, I haven't had to have more than one surgery. I see a doctor every other year and have to be careful about which sports I play. I love having a "zipper scar" to show everyone!

Lucas Rowbury My name is Lucas. I am the oldest of 5 kids, I have 3 brothers and 1 sister. I love Legos, reading and playing basketball with my friends. When I was born I immediately turned blue. It was determined that I would be flown to Primary Children's Medical Center in Salt Lake from Rexburg, Idaho (where I was born). At PCMC the doctors told my parents that I had Transposition of the Great Arteries (TGA). At 6 days old I had open heart surgery, an arterial switch, to fix my heart. I was in the hospital for almost a month. I went home and had a feeding tube, a picc line and was on lots of medicines. I am really lucky, I haven't had to have more than one surgery. I see a doctor every other year and have to be careful about which sports I play. I love having a "zipper scar" to show everyone!


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Washington

Ava Wyzykowski

Ava Wyzykowski My name is Ava Wyzykowski and I am 7 years old. I was born on November 18th 2008. During my first night I stopped breathing and my heart rate dropped really low. This happened several timesthroughout the night. The morning of the 19th I was taken by the panda care team ambulance crew to legacy Emanuel in Portland, Or. I spent three days in the NICU having several more episodes where I stopped breathing. The doctors never could figure out what was wrong with my heart. All they could tell my mom and dad was that they thought here was a problem with one of my heart valves. After 3 days I stopped having any problems and as sent home. I haven't had any problems with my heart since then. My parents have told me about the other babies they saw in the NICU who had heart problems and needed surgeries. I would like to help raise money to help make their hearts better.

Ava Wyzykowski My name is Ava Wyzykowski and I am 7 years old. I was born on November 18th 2008. During my first night I stopped breathing and my heart rate dropped really low. This happened several timesthroughout the night. The morning of the 19th I was taken by the panda care team ambulance crew to legacy Emanuel in Portland, Or. I spent three days in the NICU having several more episodes where I stopped breathing. The doctors never could figure out what was wrong with my heart. All they could tell my mom and dad was that they thought here was a problem with one of my heart valves. After 3 days I stopped having any problems and as sent home. I haven't had any problems with my heart since then. My parents have told me about the other babies they saw in the NICU who had heart problems and needed surgeries. I would like to help raise money to help make their hearts better.

Avery Gambardella2017 marks the 10-year anniversary since I had 2 open heart surgeries. I was born in Seattle, Washington with several birth defects. One being Tetrology of Fallot. Unfortunately doctors did not discover this until after I had left the NICU and had returned home. My orthopedist actually raised the first red flag at my clinic appointment at two weeks of age. We visited the cardiologist the next day and learned the heart-breaking news and I spent the next 4 weeks at Seattle Children's Hospital.

I made it through my first open heart surgery at three-weeks of age and my parents hoped I was out of the woods for six more months when another surgery would be needed to correct the hole in my heart. After several episodes of coding, I was rushed back into open heart surgery a week later for a repair to the hole in my heart.
 
The doctors warned me and my family that I would have low energy because of my heart issues; but I am a happy, fully active kid that gets to play softball, ride my bike and go camping with my family. I will need a valve replacement in the future but I know that the doctors will take care of me!

Caleb LongMeet Caleb. Caleb was diagnosed with SVT in utero at 32 weeks gestation. His hear rate was over 300 bpm (too fast for the monitoring to pick up at the perinatologist office). He was monitored and on meds for the rest of the pregnancy and then after delivery in the NICU. He was able to go home after delivery not on any meds. At 6 days old he had an episode of V-Tach and went to Chlidrens Hospital. He was then placed on meds and holter monitoring. He continued this course until he was just over a year. At that time his heart had matured enough that while he does still have an irregular rhythm he has been able to be off meds :).
 
He is aware of how fast his heart used to beat and knows how important it is to take care of your heart. He is able to play soccer and basketball and has been doing karate for 4 years now (he will earn his black belt later this year).

Gracie Jarman When I was just 5 years old I became really sick. After several days my parents took my to the ER. I was admitted to Seattle Children's Hospital and after 4 days of getting more and more sick, I was finally diagnosed with Kawasaki Disease.
 
Kawasaki disease (KD), also known as Kawasaki syndrome, is a serious illness characterized by inflammation of blood vessels throughout the body that primarily affects young children and infants. Kawasaki disease is the leading cause of acquired heart disease in children. Although about 80 percent of patients are under five years of age, older children and teenagers can also get KD, but this is uncommon.

Without treatment, about 25% of children develop heart disease involving the coronary arteries. Timely diagnosis and treatment (which usually includes intravenous gamma globulin) is highly effective in preventing coronary complications. Doctors continue to study the long-term outcome of children who do not appear to have  coronary involvement.
 
I was super lucky because my KD was caught and treated early. I go to the cardiologist and have a bunch of tests run each year but so far my heart is healthy!

Hunter King My name is Hunter. I live with my mom, dad and my older brother and sister. We also have a dog-named Daisy. I was born with heart defects. I was born with ASD and transposition of the great vessels. I almost died when I was just a few weeks old, then they found out something was wrong with my heart and they did two procedures, one was open heart surgery when I was about 3 weeks old. My heart is better now that I had the surgery but I still see my heart doctor once a year to make sure it keeps growing healthy. I do not have to take any medicine for my heart but I do try to eat heart healthy and I stay active. I love to play soccer and I love to run races with my friends and play. I also love to help in the kitchen, cooking and baking. I wish that no child would have to deal with a sick heart. I want other kids to know there is hope to be healthy and normal.

Logan BurtonLogan was born with a congenital heart defect called supravalvular aortic stenosis (SVAS) and pulmonary stenosis; narrowing of the vessels and arteries that carry blood from the heart. Logan has been monitored by a cardiologist since birth. He had his first open heart surgery at 18 months old. During this first surgery, surgeons widened the area above his aortic valve. The surgery went about as perfectly as one could hope. Logan was out of the hospital after only five days!
 
During the summer of 2015, Logan had an episode of chest pain and difficulty breathing. An ER visit led to two MRIs and a cardiac catheter, which revealed significant narrowing in his ascending artery, aortic arch and descending artery. This would require a second, more complicated, open heart surgery.

On March 1, 2016, Logan had his second open heart surgery at Seattle Children’s Hospital. For seven hours, the surgeons widened and repaired his ascending artery and aortic arch. The surgery (again) went about as perfectly as one could hope. Logan was returned to the cardiac ICU, where we expected he would recover for about 7 days and then we would head home for Recovery from Heart Surgery #2. The universe had another plan. Logan suffered an allergic reaction post-op and went into anaphylactic shock on his way back to the ICU. As a result, his stats were all over the board post surgery; he was bleeding internally and his blood pressure was out of control. At about 11pm that night, Logan’s heart stopped. A code blue was called, emergency teams arrived, crash carts were wheeled in, and for the next 36 minutes, doctors manually pumped Logan’s heart and lungs while they got him hooked up to a life support system (ECMO). Logan was on life support for two days, while his little heart rested. To add insult to injury, doctors believe Logan suffered a left-hemisphere stroke when they brought him off life support; as a result, his entire right side was not functioning. His brain was also damaged and his emotional being was severely traumatized. If the physical issues weren’t enough, Logan also suffered ICU Delirium from the emotional trauma of being in the ICU. Life in the ICU became a daily game of, “Which issue do we address today?” Logan accepted the challenge and was a ROCKSTAR throughout the ordeal. He got stronger every day and was released from the hospital after 14 days. When he came home, he couldn’t walk, talk, or do much of anything. He started intensive OT and PT for his right side almost immediately. Over the next six months, Logan made incredible improvement. He is now back in school and playing flag football. School is going well, with some struggles. He’s down to one PT session per week and, the best news of all, his heart looks fantastic. Slowly, but surely, we are getting back to 100%.

The battle is not over. Logan still has narrowing of his carotid artery (the artery that carries blood to the brain), which puts him at risk of having a stroke. Doctors still need to widen the descending artery in his heart, too. So there are still many appointments and procedures that Logan has to go through, but I have no doubt he will handle those with strength and courage, just like he has his entire life.

For the last two years, Logan has participated in his school's Jump Rope for Heart. Last year, he and his brothers were the #1 fundraiser at the school, raising over $5000 for the American Heart Association. Our goal is to raise OVER $5000 this year.

Maddy ReyesMaddy was born with Tetralogy of Fallot, a congenital heart defect. She had open heart surgery at the age of four months and continues to undergo regular testing with her cardiologist to determine when her next surgery will be to repair her pulmonary valve.

Maddy is 12 years old and stays active as a competitive cheerleader, dancer and is a member of her school's cross country team.

She serves as a Social Media Ambassador for the American Heart Association, sharing her story on her Twitter and Instagram through her handle @maddygocheer. Maddy participates in Jump Rope for Heart each year and lead her first team at the Seattle Heart Stroke Walk in October 2016.

She believes that heart kids can do anything and wants to encourage all kids to stay active so that they have healthy hearts.

Owen OlsonMy name is Owen and I was born with a heart problem called tetralogy of Fallot. When I was a baby, my heart didn't work like it should so I had to have open heart surgery to fix it.
 
I stayed in the hospital for 7 days where the doctors had to help me breath and get my heart to work better.

My mom and dad stayed at the hospital with me the whole time.

I am 7 years old now and I can do anything, but sometimes I get tired a little faster than other kids. I will have to have more surgery when I am a little older to give me a new heart valve. I go for check ups with my heart Doctor where they take pictures and listen to my heart to make sure it's working the best it can.

Malachi Trent Hi! My name is Malachi. I have a 5 brothers and 1 sister. I am the second oldest in my family. I was born with a heart disease that is called Hypoplastic Left Heart Syndrome (HLHS). That means I have a special type of heart. I only have the right side of my heart . When I was 1 week old I had my first of three open heart surgeries. Then at the age of 5 months, I went in for a heart catherization. My parents tell me that the procedure didn't go as planned. The doctors saved my life that day but I now have what's called Cerebral Palsy. I had my second surgery when I was 7 months and the third at 2 years old. It took me a little longer to be able to walk but now I don't slow down! I am excited to be able to participate in Jump Rope For Heart event so I can help other kids like me!

Sammy HopfaufSammy is now nine years old. He was born with SVT or Supraventricular Tachycardia. Sammy would complain that his heart was going nuts but as a boy who runs and plays hard, we just figured his accelerated heart rate was a result of his active play and it was hard to actually identify any episodes he may be having. While watching a movie he said my heart is going fast again. I put my ear to his chest and took his pulse. It was hard to even count the beats. I knew we had a serious issue. We took Sammy to Mary Bridge Children's Hospital in Tacoma, and that night he was diagnosed with SVT.

Since then he has been on a daily medication to control the episodes and it works but there are side effects. He lives a normal life playing sports and just being a kid. This week we scheduled the procedure that will hopefully correct his issue and allow him to be off of the daily medication that he would otherwise have to take for the rest of his life.

We are praying for the best results and no complications. As we are not huge fans of fundraisers where we have to ask friends and family for money but this hit home with us. Sammy knows the money raised helps other kids with far worse issues than his and he decided to go the extra mile to spread the word and gather donations. He is leading his school in funds acquired. Thank you for doing what you do to help those with heart issues.

Quinn AndersonHi my name is Quinn and I was a micropreemie born with heart disease. I was born 15 weeks prematurely and I weighed 1 lb 8 oz. Because I was so premature, my heart hadn't fully developed, and they called my heart condition PDA (patent ductus arteriosis). My heart stopped beating several times a day while I was growing in the NICU!!! When my heart stopped beating, the doctors called it bradycardia, and I had to be resuscitated more times than you can imagine.

Today I am a happy and healthy heart hero and I love supporting the American Heart Association; without their research, I might not be alive today to share my story.



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