Category: Meet Our Kids

On June 21, 1996, we became the proud parents of a 7 lb 10 oz baby boy. When we got home our Ricky Jr. was a good baby. He was a big eater- drinking 3 ounces every two hours. Two weeks passed when suddenly on our way home from my parent’s house, our Ricky Jr. began to cry, and I couldn’t seem to comfort him. I told my husband to turn the car around and return to my parent’s house. Being a first time Mom, I was scared and didn’t know what to do.
When we arrived at my parent’s, Ricky Jr. had fallen asleep. My mom was surprised to see me back, so I explained the sudden outburst of crying. She asked me to spend the night and told me she would help me since Ricky Jr. might have colic. I just had a rare feeling that something wasn’t right.
The next morning, I was up early calling the pediatrician. They could not see him that day and told me to keep my afternoon appointment. I decided to get ready and go early to my OB/GYN follow-up and let my doctor check Ricky Jr. even though he appeared to be okay.
Ricky Jr. slept on the way to the doctor’s office, but as soon as my husband stopped the car in front of the doctor’s office. Ricky Jr. began to cry. I ran ahead and signed in for my appointment. I asked the receptionist if I could get seen as soon as possible because something was wrong with my son. She said she would try to get me in as soon as she could. They were taking long, so I walked to the back of the doctor’s office with Ricky Jr. in my arms. A nurse walked out of a room and I asked her to check Ricky Jr. She told me to hand her my baby and as she reached for him his lips started turning purple and started to turn blue. I was yelling and crying, and the doctors ran out of the patients’ rooms. The receptionist was calling 911 while the doctors stabilized our son. An ambulance arrived within minutes and transported us to the Children’s Hospital emergency room. After three hours of waiting, the ER director told me and my husband that the chest x-rays showed an enlarged heart and a cardiologist was on his way.
The cardiologist examined Ricky Jr. and told us that our son had a heart condition called dilated cardiomyopathy. The doctor explained our son’s critical condition and told us he might not survive the night. We called our family and our church priest came to the hospital to baptize our Ricky Jr. After a month in ICU, he was finally transported to a regular room. I learned how to give him his medications, check his blood pressure, pulse, and temperature. We finally got to take him home as long as we returned to the cardiology clinic on a weekly basis.
We lived with my parents because I never wanted to be alone in case Ricky Jr needed immediate medical attention. For the following three months Ricky Jr. was in and out of the hospital about seven different times. The longest time we had him at home at one time was two weeks. On the final admission we requested our cardiologist send us somewhere my son would have more help.
Ricky Jr. was sent home with a visit scheduled to see a cardiologist in Houston, Texas. The visit was fast and short. The doctors in Houston said they could tell Ricky Jr. needed to be placed on the transplant list just by observing him in my arms. We were given paperwork to read and take home. The hospital would call us, and we would let them know what we decided about transplant. Both me and my husband told them we had nothing to think about, if our son needed a transplant then we were ready. We had already decided we were going to do everything possible to save our baby. Then they told us to wait for their call and be ready to relocate to Houston.
We headed home with some hope. A week later we received a call from our medical insurance company letting us know they were having problems because the hospital in Houston was not in their network. I was very upset and told them we needed help. We could not be waiting while our son was fighting to stay alive. We were then told a hospital in San Antonio, Texas was within their network. They scheduled an appointment for us two weeks later. After a week, Ricky Jr had another episode where he stopped breathing. We were back in the hospital and he had severe heart failure. The Corpus Christi cardiologist contacted the San Antonio cardiologist and Ricky Jr was flown to the hospital.
On the first day we arrived Ricky Jr was placed first on the national transplant list. We were finally listed and waiting for our miracle. On January 15, 1997 we got the call we had been praying for. The surgeon was going to fly to Minnesota and bring back the heart for our son. We were very happy but also very scared. We knew our son needed the transplant and we also knew he could die during the procedure. We called our family, and everyone headed to the hospital. Ricky Jr was taken to the surgical floor about 5 a.m. and we were still awake in a nervous state. We kissed our son as the technicians rolled his bed into the operation room. Each hour we were given updates from the surgical room. Everything was going just as planned. The heart worked perfect for our Ricky Jr. When we saw him for the first time after his transplant, Ricky Jr looked beautiful. He had IV’s everywhere and a breathing tube, but his skin had color to it. He was amazing; he looked like a normal six-month-old baby.
After a week we were sent home. We decided to stay in San Antonio to be close to the doctors who could care for our Ricky Jr. Life was getting to be normal. Of course, we had to get use to our medication routine and doctor visits, but we were glad to be living a stable life away from the hospital. Ricky Jr continued to grow and get strong. He got sick every once in awhile but usually with viruses or normal toddler issues. When he turned five, we got to take him to school to start kinder. He also started playing t-ball. He loved playing with his team and hitting the ball. We loved seeing our baby enjoying life.
At the age of seven, I noticed Ricky Jr. was needing to take naps after school. One of his teachers had also mentioned that he would fall asleep during class. I got worried when I noticed he was having a hard time breathing when we had walked a short distance. At one of our follow up appointments, I told our cardiologist about our concerns. He decided to order a stress test and wait for the results. The results did not show any issues, but the doctor decided to perform a heart cath.
The day of the heart cath we got the bad news that our Ricky Jr. had transplant coronary artery disease. There was not cure and the only thing that could be done was to be re-evaluated and re-listed for another heart transplant. I remember walking into the bathroom at the hospital and getting on my knees to ask for prayers and strength. We did not know what laid ahead, but we knew that we were determined to do whatever we had to do to help our son.
In June 2004 we were sent to Houston, Texas for re-evaluation for a second heart transplant. We went for an appointment at Texas Childrens Hospital. The day of the appointment Ricky Jr was already in a wheelchair because he couldn’t walk very far without his lips getting purple. The doctors told us that Ricky Jr had to be admitted into the hospital and stay inpatient as he waited for his second heart.
Ricky Jr’s eighth birthday came around and we celebrated in the hospital with everyone on the floor. He was on IV medications to help pump his heart and could walk around the floor. He was taking one day at a time and we were enjoying our son to the fullest every day. We were able to have the priest come over and give Ricky classes for his first communion. He was able to complete all his requirements and we were able to celebrate his first communion at the Chapel in the hospital. We had a big celebration after the communion with the whole hospital floor.
On November 8, 2004, Dr. Dreyer asked to speak to me outside Ricky Jr. room. I was so scared and worried because I thought he was going to tell me that Ricky Jr. was coming off the transplant waiting list. Patients get removed from the waiting list when they have fevers and he had not been feeling well a few days before. To my surprise Dr. Dreyer tells me that they got a call for a possible heart for Ricky Jr. I was so excited but didn’t know how to react. Dr. Dreyer explained to me that several tests had to be done before we could tell Ricky Jr because we had to make sure it was the perfect match. I called my husband, so he could join us at the hospital. While we waited to make sure it was the correct heart for Ricky Jr, I packed up his hospital room. Ricky Jr. kept asking me why I was packing up his toys. I couldn’t tell him, so I said I was just trying to make sure we wouldn’t lose his things. A couple of hours later, Dr. Dreyer came back and told us the heart was coming soon and we could tell Ricky Jr. now. Dr. Dreyer had the honor of telling Ricky Jr. his heart was on his way. I’ll never forget the expression on his face. He was so happy he raised his arm with a fist and said “Yes”. The surgery started that evening and went through the night. Our families were with us in the waiting room and every hour we were updated as the surgery progressed. We were blessed with a successful surgery. Our Ricky Jr. did well and was moved to a regular floor fast. We decided to relocate to Houston, Texas after Ricky Jr.’s transplant so we could be closer to the hospital for all his follow-ups. Once again, we created our home and created our own normal life. Our Ricky Jr. started school, my husband transferred from his San Antonio job to Houston, and I went back to college. Ricky Jr. had too many heart cath’s that we lost count. He had good biopsy scores and some scary ones, but he was healthy. After three years in Houston, Texas, we made the hard decision of moving back to San Antonio, Texas.
During one of his follow up visits in 2013, Dr. Dreyer mentioned he was part of Hunt with Heart and thought Ricky Jr. might enjoy going to camp. We were sent all the information and got him ready. He was able to attend the Spring Camp of 2013 with my husband. I remember being worried because I couldn’t reach him or my husband. When they finally called me, they were having such a great time they didn’t want to come home. Ricky Jr. couldn’t stop talking about camp. He enjoyed shooting the guns, hunting, and eating all the good food at Beaver Creek Ranch. I had never seen him so happy. Hunt with Heart has been such an important part of his life. He’s been able to enjoy outdoor living. We would have never known how much he loves hunting. He’s made some friends and enjoys seeing everyone every year at the Clay Shooting event and Christmas party. Thank you everyone at Hunt with Heart for helping Ricky Jr. enjoy Life and step away from all the medical issues he’s had to live with all his life.
We appreciate all you do,
The Rivera Family

 

Kooper was diagnosed with Hypertrophic Cardiomyopathy in 2012 just 2 weeks after his brother, Case, was diagnosed. HCM is a genetic disease causing the walls of the heart to abnormally thicken. As with many heart conditions, pulling all competitive sports and activities is the first thing they did. Kooper was diagnosed the same week he was going to start his 7th grade year off as quarterback of his football team. This was a huge adjustment for a fit, active, athletic kid! It has been 6 years since his diagnosis and Kooper has found many things he loves and enjoys. He is an avid hunter and is learning guitar. He is now a freshman bible/missions major at Abilene Christian University and plans to minister to youth and family. His time at the Hunt With Heart camp last spring gave him a chance to spend quality time with other kids with the same health challenges as him. Harvesting a big Corsicana Ram topped off a great weekend! This fall, he was able to be junior counselor for HWH and was blessed to get a huge, beautiful Eland. What a memory and experience he will never forget! Thanks to HWH! We are proud to be part of the HWH family!

The day Raymond was born was full of commotion, anticipation and excitement. they were late getting me in to the delivery room Velinda was not doing so good cause her blood pressure was up high and they could not get it down, they brought me into the room and once she knew I was there her pressure started coming down, they were well into the C-section and Raymond popped out minutes after I was in the delivery room, so much for pictures. They were working on Raymond at the time and were giving him oxygen to bring him around; his first cry was like a kitten real soft and barely could be heard. After a few minutes of oxygen and crying they let me take him to see his mother and then off to the nursery. They measured him took his weight, cleaned him up and he got his first shot in this new world of being poked, prodded and examined. We were the proud parents of a baby boy 6lbs. 3oz.

The day he was born the pediatrician examined him and detected a slight heart murmur, he then came to visit us in the room and the questions started, how are you doing , how is your family doing , dose any one in your family have heart problems that you know of . Then well we have detected a heart murmur in your baby boy and we are going to monitor him while he is in the nursery, and we may want to do an echo before he is discharged. That’s when things started getting fuzzy, things were not right and everything was slowing down in my mind. This was not happening! Things were happening so fast and then real slow, his doctor ordered an echo before his discharge but since he did not state that it was an emergency, the attending discharged us on a Saturday morning to go home since Raymond’s doctor was not on call for the weekend.
Monday morning Raymond’s doctor called us first thing wanting to know why we did not have the echo done, then he went on to say he had ordered the echo to be done before his discharge. So, since he was discharged the calls started to get Raymond scheduled for a heart echo. But in the mean time he gave us instruction to keep an eye on Raymond and told us to watch for color changes in his fingers and legs and if he turned blue and stayed blue for several minutes to call 911, finally after two months he was scheduled for an echo. The day of the echo we did not know what to expect they sedated Raymond and ran the test, on the screen there were pictures of the heart and we could see it beating and red and blue colors going all over the place and no one would say any thing, we asked questions and all they would say is your doctor will let you know something after he reviewed the tape. several more doctors popped their head in the room and the would concentrate the picture in an area of the heart for more detail and more pictures the whole process took over 2 hours and they still were looking and different areas of the heart. Finally they were finished with the echo and we then went to the clinic, where we met with the cardiologist , at the time it didn’t dawn on us that there was a real problem , he said he was going to bring Raymond’s condition before the panel for discussion and he would call us for an other appointment after the panel has reviewed the case , we should have known this was serious when the cardiologists gave us all of his phone numbers and told us to call if anything changed in Raymond’s condition day or night.

About three weeks went by and the panel met, we were called in for an appointment at TCH and we thought ok everything will be ok nothing is terribly wrong and the will be able to correct the problem with medication. Well the appointment was with the surgeon that was going to do Raymond’s surgery. SURGERY yes surgery. he was very straight forward and did not beat around the bush, he said Raymond had DORV and with out surgery his life expectancy was six months, at that time I believe I went into shock I could hear the doctor talking but all I could comprehend was bla bla bla . Everything went into slow motion and it was like I was seeing someone else, this was not happening to us. It couldn’t we have a beautiful little boy without any scars and they are talking open heart surgery and cutting him and he will have this tremendous scar on his chest. They discussed the surgery and told us that they would update us every hour on his condition during the surgery and if we had any questions. I don’t believe I comprehended any thing, here you just dropped this bomb shell and you want to know if I have any questions. They scheduled the surgery for when he was 6 months old. Till he turned six months old we had to watch very closely and check his condition at all times, Velinda would have me check on him in the mornings before going to work, just to make sure he was still breathing. I remember breaking down several times and some evenings I think I cried myself to sleep. I had several dreams or visions where I would be dreaming the worst and a voice would wake me up and say he will be fine I have a plan for him and everything would be calm and I would drift off to sleep again.

When we reached the surgery date of course we go in the day before to get him checked in and prepped, the day of the surgery they came and got us we walked down with him and when we gave him over to the surgery team it started to hit home what was happening,
There was a catholic priest that prayed with us for a while and then we checked in to the waiting room area. We had a little room that had a door that connects to the hall way to the surgery center, they gave us updates every hour on the hour all day long, I think Velinda got mad at me during this time because I slept during most of this time and would not tell her much of anything all day long. Raymond’s surgery was 12 and a ½ hour long; he was on the heart lung bypass machine 11 hours. He went straight into ICU after wards. that evening we got lucky and had a room at the Ronald McDonald house and she asked me how I could sleep when Raymond was in surgery, I told her that when you have a dream you want to come true, you don’t tell any one about it, and when you have a dream you don’t want to come true you tell everyone about it. well I finally told her of my dream I wanted it to come true, and surprisingly she said she had the same dream but she was too upset to sleep. After that night we spent the next seven days in ICU with Raymond, we could not sleep in the room but we could sleep in the waiting room at night. During this time, we learned how to care for him and how to pick him up to hold him, we also witnessed the power of touch and being around other people and the healing effect, this has on people that are ill. There was a little Hispanic girl in the next room, her parents had one vehicle and both parents worked so when they came to visit it was usually around 11 pm and they stayed 30 minuets to an hour each evening, the little girl went into cardiac arrest 3 times before the ICU administrator approached us, they wanted to know if they could move the little girl into Raymond’s room since we werethere all day long. they told us we could pick her up and hold her or we could just talk too her and maybe touch her to let her know someone was with her, so we did and in the evenings we would let the parents have time with their daughter without us in the room, come on this was usually around 11 pm to midnight so we were usually trying to let Raymond sleep any way. well with this human touch the little girl came around and started to improve and when we moved to the 15th floor the little girl was moved the same day so she was on the way to getting out as well.
When we moved to the 15th floor we went through 5 days of training on how to care for a heart patient and change dressings and general care before we were discharged, for 15 days TCH was home.

Now that we have had one surgery the next surgery date has been postponed since last February, Raymond is below weight and they need him to gain 10 pounds just to make it through a next surgery of course should something happen in the time being I’m sure they would do what is necessary. Raymond is 4 years old and started Pre-K this year we are now teaching the school district how to care for a Heart Child and the restrictions placed on him by his doctors. The ONE greatest fear I have is running out of insurance in the future, his heart condition is not a fear it is something we live with day to day and each day we have him is a blessing…

Raymond’s diagnosis after surgery was DORV, TOF, PDA, VSD &

10/16/2018

Today Raymond has overcome a lot of obstacles, his heart condition remains somewhat stable but the other diagnoses are continuing to rise so far, he has- Epilepsy, celiac disease, migraine headaches, seizures and Asperger’s syndrome. But we take one day at a time and live life to the fullest.
Raymond is now 15 years old and we have given up on the school district and have been Home Schooling now for the last 5 years.

Logan was born January 31, 2000 and had an uneventful first year of life. It wasn’t until he turned 1 year and 1 week old that he became very sick and was referred to a cardiologist for an enlarged heart. His family was told that his heart was only functioning at a13% ejection fraction. He immediately started intensive treatment plans including catheterization, oral medications, and nonstop testing.

but the days he spends with his Hunt with Heart family he isn’t handicapped, he isn’t sick, he isn’t alone. Those are the free moments in his life where his illness doesn’t define him and he experiences his greatest joys in life. They are his best memories.

“There are things every child dreams of doing and despite his disabilities, Logan is no different. He sometimes fails to accept the inability to do things and other times the realization is a crushing blow. As his parents we have had to watch him struggle his entire life. As parents of a child with disabilities, we sometimes struggle with accommodating his dream, so we are forever grateful to Hunt with Heart and Beaver Creek Ranch owners and staff for making Logan’s dream come true. The day he left for his hunt, I had never seen him so excited that he was going with his dad, hunting, just like every little boy dreams! They bragged about the food, the unlimited supply of cookies, the staff, and accommodations. Though he may have required unconventional methods to shoot a deer, Logan’s guide put him in the stand and the boy drew one final breath, held it as he fired his shot, and drew his first breath as a man. In that moment he knew no pain, no illness, no disability, no limits. For a moment he was free!” -Sheri, Mother

“In March of 2012, I was diagnosed with restrictive cardiomyopathy. This means my heart was dangerously enlarged and the only way to fix it was a heart transplant. While all of my friends were planning what summer camps they wanted to attend, my mom and I had to up root our lives in our small town and move to a large unfamiliar city. To be eligible for my transplant, I had to stay within an hour of Texas Children’s Hospital at all times. We lived in a travel trailer 15 minutes from the hospital, while my dad lived seven hours away. He would visit when possible but the unknown of how long I would have to wait for “the call” saying I was getting a heart was hard on my family. After a year of living like that, AEP was gracious enough to let my dad transfer to El Campo which was only an hour and a half away from us. It was certainly a better situation, but all of our lives revolved around the unknown of how long this would be our new “normal”. During this time, I started a new school and it had nearly as many students as my hometown had in their entire population! Several of my peers had parents who were doctors or nurses at Texas Children’s Hospital.

Two weeks before I would receive my heart transplant, I went to Camp Beaver Creek hosted by Hunt with Heart, and it changed my life forever! All the kids I met were going through all the same stuff I was going through so basically, we were all normal to each other. My guide, Slate, never once treated me as if I was sick and acted like he had known me forever. Before attending Camp Beaver Creek, I was not able to talk about my transplant. Beaver Creek allowed me to not be scared and showed me I wasn’t the only one.

A week after camp on a Sunday one of the other campers that I had gotten really close with, Rylan, got “the call” and was going to receive a heart transplant! My mom and I would go up there everyday after school to see him and his family. Five days later, my high school counselor burst into my class and called my name. She gave me the look…the look that meant my mom had gotten “THE CALL”. We ran down the hall together and my friends were shouting, “Why are you running?” After two years of waiting, I was finally able to proclaim, “I’m getting a new heart!” My life and the lives of my family had revolved around waiting for this moment and when it finally came, it flooded all of us with so many emotions. Fear of the process, excitement of healing, and grief for the family who lost someone they loved but cared enough to give me a second chance at life. My first heartbeat was at 2:15 AM on April 26, 2014. The recovery and healing process was painful, exhausting, and freeing all at the same time. Every minute Rylan and I were in the hospital someone from Hunt with Heart was always there. I had the best gift of all…LIFE! I am a survivor!

I am thankful everyday for this opportunity because I know personally that so many don’t get the chance I’ve been given. Thanks to my Hunt with Heart family for taking all my worries away! I can honestly say Hunt with Heart changed my life forever and I’ll forever love the people of this organization with BOTH my hearts!”
-Macey.

ordan was born on May 29, 1993 with multiple congenital heart defects, which included, pulmonary atresia, ASD/VSD, second degree heart block, transposition of the great vessels and dextrocardia. The cardiologists knew the day he was born that he would eventually need a heart transplant. Two of Jordan’s heart defects would need to be corrected right away so three days after he was born Jordan underwent his first heart surgery at Texas Children’s Hospital to put in place a conduit to bypass his pulmonary valve and a pacemaker to correct his second-degree heart block. He would then have another open-heart surgery at 2 ½ to correct his ASD/VSD and then again at 4 ½ to replace a broken pacemaker wire – that everyone had a good idea broke because of his new-found love for climbing fences! After that, Jordan had a pretty normal life other than daily meds, TCH check-ups and pacemaker battery changes. Jordan was so thankful that God allowed him to be all boy – enjoying some sports (which his dad coached to keep an eye on him), hunting, fishing and camping.

In ninth grade Jordan’s heart began to significantly enlarge and become sluggish in its pumping function. Jordan also began to notice a difference in his energy levels. It wasn’t until the beginning of Jordan’s senior year of high school though that he developed bi-ventricular heart failure and was placed on the heart transplant list. Jordan waited at home while attending high school and looking forward to all his senior year had to offer. However, during spring break, Jordan’s heart went into Ventricular Tachycardia and his health began to deteriorate fast. He was life flighted from Crystal Beach to TCH where he had his heart shocked back into rhythm. Unfortunately, the VT caused a pulmonary embolism and increased the need for a defibrillator. Jordan spent 3 months in the hospital before his heart completely failed which lead him to become the first ever patient to receive the SynCardia Total Artificial Heart in a pediatric hospital. This artificial heart would allow all Jordan’s organs to improve and bridge him to transplant. Five months later, on October 29, 2011, Jordan would receive the gift of life in God’s perfect timing – a donor heart. The following August 2012 he was able to finally attend Texas A&M University Galveston with his new heart ready to focus on the future!

Jordan adjusted to college life quickly and was enjoying his independence even with occasional visits to the TCH ER for not feeling well. Looking back he can see that those trips to the ER were letting him know that his new donor heart was beginning to struggle. In April 2015 Jordan’s heart would once again go into complete heart failure. During the first couple months in the hospital Jordan began to experience trouble breathing and would need to be resuscitated twice. God’s grace and the staff at TCH were amazing! This time to assist his heart the TCH surgeons implanted the Impella , a fairly new technology, in an experimental way so that Jordan would be able to be mobile while he waited on a donor heart. Jordan’s cardiologists were all amazed that he was able to do as much as he did with such low oxygen levels. On July 9, 2015 Jordan would once again receive the gift of life – a donor heart. Praise God! After 5 months in the hospital Jordan returned home with his second donor heart and began to focus on graduating from college. He was able to take a class online for the spring 2016 semester, attend summer classes and graduate December 17, 2016!! Whoop! God is good! Jordan is currently employed by Cudco as a project manager, living everyday to the fullest and forever thankful to his donors, their families, Texas Children’s Hospital and all the prayers that surrounded him!

God has definitely prepared Jordan for his heart journey and encouraged him along the way with all the loving people who have come into his life because of it, especially TCH and Hunt with Heart! According to Jordan:

“I have had the opportunity to be both a camper and a counselor with Hunt with Heart and they both share one thing in common, they were both life changing! As a camper my eyes were opened to what hunting was truly about, sharing my love for the outdoors with kids that have never been hunting. It was also an honor to be awarded the Ambassador Award and invited back to camp as a counselor where I was able to encourage other kids who have also faced tremendous obstacles do to their heart conditions. Without Hunt with Heart most of them would never have gotten the chance to experience what I cherish and love so much – hunting and fishing in the great outdoors! I especially enjoy getting to see their face when they get the chance to shoot their first gun and the huge smile when they get to bring their animal back to camp. Words cannot describe what it means to me to be able to experience those moments with them. I love to hunt and fish, but I would turn down a hunt anywhere in the world if it meant I could attend Camp Beaver Creek! It truly is a life changing experience for me every time a I set foot on Beaver Creek Ranch with the amazing people of Hunt with Heart.” – Jordan, Member

I was born with a rare disease, pulmonary hypertension. The type is called pulmonary veno occlusive disease, which is the most rare of any. I didn’t know I had this disease until, slowly I got to where I couldn’t run or be active without loosing all my breath. I grew up an athlete and in high school, I had to give it all up and didn’t know why. One day, I was swimming and could no longer gain my breath back and was in an induced coma and was not likely to survive. I did survive that and doctor’s thought everything would be fine after. I still had trouble and after a echo-cardiogram, my heart doubled in size and my only chance was a transplant. The disease was a lung disease that closed off any way for blood to pump, causing my heart to work harder. I had less than a month of survival and my doctor said it could take a year before I got lungs. I waited 8 days on the list and received the call. I decided to give everything I had and place it in God’s hands. I was terrified, I didn’t know what to expect. My transplant was successful and was up walking in 2 days. I was released from the hospital in 3 weeks and lived in the Houston area for a year, so that way I could obtain any treatment I needed. The recovery was not easy, it was very painful but now being a runner and playing volleyball, I couldn’t imagine my life being stuck in a wheel chair, on oxygen or not be living to see my beautiful nephew born. This past year I was diagnosed with chronic rejection but with a quick treatment and adjusting my medications, I am now in better standings than I was before rejection.

I was born with multiple congenital heart defects , which included, Ventricular Septal Defect, which is commonly referred to as a hole in the heart, (which I had several ) Pulmonary Stenosis which obstructs blood flow from the right ventricle to the pulmonary artery & Supraventricular tachycardia. which is a rapid heart rate. It was at 2 weeks old that I would have my first stay in the NICU as a result of complications due to my heart defects. Although they sent me home & said I would be fine, My mom’s maternal instincts told her that I was not correctly diagnosed & never gave up until I was properly diagnosed at age 2 with Long QT syndrome type 2 . LQTS is a disorder of the heart’s electrical activity. It can cause sudden, uncontrollable dangerous arrhythmias in response to exercise or stress. I am going to live a long and happy life despite my LQTS, but there are some risks and restrictions. I was told that I could never play contact sports or be on a competitive team.

Even though I was unable to play on the teams that my friends did, I found other ways to enjoy my free time after school. Hunting, fishing, and spending time in the outdoors were my kind of sports – the kind that I will enjoy for my entire life. My passion for the outdoors began to grow at a young age. I would spend the first 13 years of my life with no real complications, only frequent doctor visits and medicine 3 times a day. We would always ​carry an Automatic External Defibrillator with me anywhere away from home, just in case.

I went to a small Catholic middle school that was very proactive in being Heart Safe, thanks to my older brother Nick. He worked with local American Heart Association &​ ​Children’s Miracle Network to equip the school with Automated External Defibrillators (AED) and train the faculty on how to use them. My family and I thank God that the school was ready. One day at school, feeling weak recovering from the flu, I had my first ‘heart episode’ as I was running up the stairs. My heart went into ‘torsades de pointes’, a specific form of polymorphic ventricular tachycardia, and my heart rhythm became chaotic and no longer could beat effectively which stopped the blood flow to my brain & I became unconscious. Thankfully an AED was less than 5 feet away, and my​ ​teacher used the AED and CPR to save my life. I was taken by ambulance to Texas Children’s Hospital where I would spend the next 2 weeks in ICU. After I was stabilized, the Doctors implanted an Internal Cardiac Defibrillator( ICD ) and a Pacemaker. So I no longer have to carry around the external AED since I have a built in one. I consider it my “safety net” should my heart every start to beat irregular it will automatically correct the rhythm.

A few years have passed since all of that and I thank God that I am doing great! Although I still struggle with anxiety my faith has kept me strong through it all. The expert care from TCH, my heart medicine and frequent checkups, have kept me in good physical health. I truly have a passion for conservation and the outdoors, and I want to become a hunting and fishing guide or a national park ranger when I am older, so a program that focuses on heart health and the outdoor lifestyle is the perfect match for me!

Hunt with Heart provides once in lifetime opportunities that make life long memories. I will never forget tracking and hunting my first ram with my awesome guides and friends, Case and Tim. Hanging out with them, fishing for bass, and spending time at the beautiful Beaver Creek Ranch made my everyday anxieties melt away and gave me a newfound sense of freedom. But what truly makes Hunt with Heart special and sets it apart from the other outdoor adventures I have experienced are the friendships I formed with kids that have had similar struggles. Hanging out with friends who truly understand all the hardships that come from living with a heart condition gives me a rare sense of connection and community like no other. I am truly grateful to the Jim and JoAnne Elzners, Joe, Angelica, Case, Tim and everyone else involved for creating and operating​ ​Hunt with Heart. It is truly a special organization and all the love I’ve received from Hunt with Heart has kept me in good spiritual and mental health. This program will always have a special place within my heart. All the volunteers, leaders and families all work together to create a beautiful community focused on bringing strength to families like mine. I will be forever grateful. Thank you for the bottom of my HEART. -Garrett

Victoria “Tori” Tomson was born on August 20, 2004. Prior to her birth she was diagnosed with multiple heart defects which included Double Outlet Right Ventricle with Transposed Great Arteries, Mitral Atresia, Multiple ASDs and VSDs. A plan was put in place by Texas Children’s Hospital’s doctors to add a Pulmonary Artery band and perform an Atrial Septectomy immediately after birth. This was to be followed by Glen Shunt and Fontan surgeries as she grew older.

Immediately after birth, it was discovered that she would need a Tracheoesophageal Fistula repair. This meant that her esophagus and trachea were attached, which would cause her to choke while feeding on her formula. This took precedence over her heart surgery. This repair was done successfully two days after birth, which in turn delayed heart surgery for two weeks.
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Two weeks later, we were back to the original plan of action to address her heart issues. At two weeks of age, Tori underwent her first open heart surgery. Although the surgery was successful, Tori was faced with another major hurdle. While recovering from her first heart surgery, she contracted bacterial meningitis. This was the toughest of her challenges in her very short life span. Thanks to God, and the wonderful doctors and staff, she was able to miraculously pull through. After a two month stay in the hospital, Tori was finally able to go home.

Five months later, Tori was back at TCH for her Glen Shunt surgery. This surgery could not have gone any more smoothly. Tori had her second heart surgery and was home a mere week later. Tori and family were glad to be home in time for her first Easter.

At four years old, Tori underwent the last of the planned heart surgeries, the Fontan. This surgery presented Tori with a new set of challenges. The Fontan was successful, however Tori’s anatomy took some time to adjust. Tori was unable to digest fatty foods which caused doctors to put her on a completely fat free diet. Tori stayed in the hospital under close watch for nearly a month. Once her body adjusted and was able to digest normal foods, she was released to go home.
Although Tori has faced major challenges in her life, she has always had the heart of a diva. Tori is involved with many extra-curricular activities such as competitive dance, cheer, theatre, choir, student counsel, Best Buddies (serves as President), and church youth group. She is a well-rounded and diverse young lady.

She enjoys everything from shopping and getting nails done with mom to fishing and hunting with dad. Hunt with Heart has been a great fit for Tori and it has presented her with hunting opportunities that she may not have had otherwise. This organization is filled with people who genuinely care about giving these children unforgettable experiences. She has made lifelong friendships and memories with Hunt with Heart and for that, she and her family are eternally grateful.

Isaac has endured 3 open heart surgeries, several heart catherizations, 2 hip surgeries and 2 leg surgeries.