Meet WSA Kids With Heart

November Featured Kid - Otto Xavier Olson


Otto Xavier Olson has a congenital heart defect called Supra Total Anomalous Pulmonary Venous Return (TAPVR) that was discovered hours after birth. Total anomalous pulmonary venous return (TAPVR) is a rare congenital malformation in which all four pulmonary veins do not connect normally to the left atrium. Read more about our featured Kid With Heart: Otto.

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.

AlaskaArizonaCaliforniaHawaiiIdahoMontanaNevadaOregonUtahWashington

Alaska

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

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!


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California

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.


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Hawaii

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.


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Idaho

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.


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Montana

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.


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Nevada

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!


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Oregon

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.


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Utah

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 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.



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