Isaac has endured 3 open heart surgeries, several heart catherizations, 2 hip surgeries and 2 leg surgeries.
I am a nineteen-year-old girl with congenital heart disease. When I was born my parents had no idea I had heart defects. It was not until the next day when the doctors and nurses swept me away to have my first heart catheterization procedure that they found out that I had congenital heart defects - pulmonary atresia with VSD and a mitral valve defect known as parachute mitral valve. So far, I have had four heart surgeries, several cardiac MRI’s, countless echocardiograms, and too many heart catheterizations procedures to count. When I was in Kindergarten, as well as my senior year, I spent six weeks in the hospital with a condition known as endocarditis. I was also hospitalized several times due to nutrition complications and respiratory complications that are quite common in children that have congenital heart disease. Through the years, I have become very familiar with the people and the places at Texas Children’s Hospital, as well as being accepted on to the children’s advisory board.
Although I spent so much time at the hospital, you would never have known that I had a heart condition. By the time I was three years old though, it started to become more apparent that something was not right. My skin was starting to change colors and I was becoming very tired, very quickly. I had a really hard time doing any physical exercise at all. I was starting to have the expected side effects of my previous heart surgeries and because of this, the doctors told my parents that it was finally time for the big surgery. They called it the final repair. During the 14-hour procedure, they closed the holes in my heart, gave me a new pulmonary valve, and did a minor repair on my mitral valve. After that, I was closely monitored by the doctors. The years went by and I lived as normal of a life that I could despite the medications and the scars on my chest and back that I lovingly refer to as my “beauty marks.” I tried to fit in with others by trying out many different types of physical sports. I found out that soccer, tennis and softball were not sports I was going to excel in. When I was 11, I joined our local 4-H group. I started out in 4-H doing archery but after a year I switched to shotgun sports such as trap, skeet and sporting clays.
When I was 13, I had another heart catheterization procedure done. My doctor told my parents and I that it was time for my fourth surgery. It had been ten years since my last surgery and I did not know what to expect. Dr. Fraser replaced my pulmonary valve and I also had another mitral valve procedure, too. I had the surgery and made a remarkable recovery.
After this surgery, when I was at the hospital for a check-up, something wonderful caught my eye, it was an advertisement for Camp Beaver Creek. It talked about hunting and fishing and I knew that I wanted to go to this camp! I had been shooting for a couple of years and knew that I had wanted to go hunting but never had the opportunity. I was so excited at the possibility of getting to go hunting for the first time that I was beside myself. After looking at the website the first thought I had was how exciting it would be to harvest a zebra. At this point though, I just wanted to see how I would do at hunting. Since I had just had surgery I was unable to attend the first camp, but I was told I would be able to attend the second camp
When I arrived, I was welcomed to a beautiful room and some camo Game Guard gear that I still wear! During the Hunt with Heart weekend at Camp Beaver Creek I had such a blast! I was able to harvest a Merino sheep! I had the time of my life! I think I had more fun than the boys! I have been able to show off my set of horns on many different occasions thanks to Taxidermy by John Guidry. I am so thankful for the opportunities that have been made available to me because of HWH. Opportunities that would not have been possible otherwise! As a result, I have volunteered with Hunt with Heart on every occasion that was made available to me. Not only was I able to attend Camp Beaver Creek, but I was also able to go to Canada with my Uncle. Please know that my life has been blessed because of everyone that took part in making my dream come true! Without Hunt with Heart I would have never been able to go hunting, much less go to Canada to hunt.
Hunt with Heart hosted their 12th Camp Beaver Creek and welcomed 6 new families into our Hunt with Heart Family during the first weekend of April.
Camp Beaver Creek is a weekend-long hunting, fishing and shooting experience for six young people battling severe illnesses and their parents. Due to the nature of their illness, most have not had the opportunity to play team sports. Camp Beaver Creek focuses on creating camaraderie, inspiring confidence and building friendships through the sport of hunting and fishing. This environment focuses on their abilities, rather than the restrictions of their disability. Camp is offered twice a year once in the spring and fall and serves as an entry point for families to become involved in Hunt with Heart.
The campers and their families arrived Friday afternoon, we had a quick meet and greet and lunch and then they were off to the range for a safety briefing and target practice. Each camper has to "qualify" by hitting a specific target before going out to hunt for the evening. Three of our campers went out to harvest their ram on Friday night, all of them had a successful hunt and were able to harvest a Corsican Ram. The other three campers went out to hog hunt or check out the rest of the ranch. Then next morning the campers switch, we had two harvest their rams that, but one ram was making it a little challenging and didn't want to come out. But our camper didn't give up hope and keep hunting in with a great attitude, they were finally able to harvest the ram early Sunday morning. Saturday night we hosted our banquet, which a time to look back on what had happened during the weekend and see how our campers, families, and guides have grown from their experiences. It's a very magic time, a time you have to witness to fully understand it's impact. Sunday morning after the last ram was harvested everyone got ready to head home after an amazing weekend of fellowship, making memories and eating amazing food.
During the weekend we also had a few special guest attend the camp, it was a great opportunity for our donors to see and witness the magic of camp and have a better understand of our organization and the families we serve. We were so thankful to have them. They made the camp very more special!
2018 Spring Camp Beaver Creek was very successful and we are so thankful to have gained 6 amazing new families with 6 amazing life stories!
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.
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.
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
Jordan 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
This past weekend, Hunt with Heart had their 2nd Annual Family Clay Shoot Day. Westside Sporting Grounds in Katy, Texas generously hosted us making it a day our families will never forget. Each one of our young people were able to shoot along with one of their family members.
While we were waiting for everyone to show up our families got the chance to mingle and catch up with one another. After catching up we had a short safety meeting, broke into our teams and then we were on our way to enjoy the afternoon on the course. It was a great opportunity for our families to get in some practice and better their shot. After going through the course and getting some great pointers from our guides, we ended the afternoon with lunch and telling stories from the day.
Our 2nd Annual Family Clay Shoot day was a blast making it a very successful day!
"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!”