Hope

HOWDY! My name is Hope Butler and I was born March 1st 2002 in Temple, Texas.  It didn’t take long after I was born to realize that something was wrong.  It had a lot to do with the bright shade of blue that I was sporting.  I was immediately rushed to Dell Children’s Hospital in Austin, Texas and was diagnosed with Tetraology of Fallot which is 4 different heart defects: VSD (Ventricular Septal Defect), Pulmonary Stenosis, Right ventricular hypertrophy and an overriding aorta.   I spent 15 days in the hospital and had my first open heart surgery on March 15th 2002 and went home on March 30th 2002.

My mom and I moved to Deer Park, Texas when I was 4 and I was able to play various sports as an elementary student and I was an avid participant in our community theatre.  I had deep roots in the rodeo world.  My dad was a team roper and my great aunt was a barrel racer.  Even though I loved basketball and theatre, my heart belonged in the saddle.   When I was 10, my stepdad got me involved in horseback riding lessons and it didn’t take long for my parents and grandparents to buy me my first horse, Baybe.

During the next few years and multiple heart caths later, I was working hard to further my barrel racing hobby while working hard at school and being an active member of the Deer Park FFA Horse Judging Team.  I was determined not to allow my heart condition hold me back.

In February 2017, during my cardiologist appointment, Dr. Justino noticed a curvature of my spine from my chest x-rays.  I was referred to Dr. Phillips at Texas Children’s Hospital who diagnosed me with Adolescent Idiopathic Scoliosis and we scheduled spinal fusion surgery for November of my sophomore year in high school.  My biggest fear was that I would not be able to ride again but, I worked hard and pushed forward.  A year after my spinal fusion surgery I was competing again and two years after the surgery I was competing in Las Vegas.

Although, I will be battling cardiology and orthopedic issues for the rest of my life I refuse to let them hold me back.  I will be starting college this year and pursuing my dream of working in an equine breeding facility.

My experience with Hunt with Heart has shown me that I do not have to fight alone.  I was given the opportunity to network with people that faced the same struggles that I do.  I am an avid hunter and I couldn’t be more blessed to be given the chance to form these relationships while enjoying nature and doing something that I truly love. I would love to volunteer my time as a guide in the future so that I am able to further share my experience.  I will never forget and I will be forever grateful to all the guides, donors, and volunteers who are involved in Hunt with Heart organization.

Dustin

“Hello, my name is Dustin Fontenot, and I am a true country boy.  I love anything outside- hunting, fishing, welding, working with my animals and working on cars.

On January 15th, just one day after my 15th birthday I received a gift no one wants for their birthday, and that was a cancer diagnosis.  Saturday, January 14th, 2017 was just a normal day, it began with me showing my heifer at our local progress show.  Followed with an evening spent with friends and family, including chasing chickens around the yard.  Sunday evening my mom took me to the ER at TCH where within a few hours I was diagnosed with cancer.  We would soon find out it was non-hodgkin’s lymphoma,  complete with a collapsed lung and chest cavity full of fluid.  I was admitted to the ICU and immediately began treatment.  It was a rough 11 days.  Upon being stabilized I was permitted to go home.

The next week I had a port placed to make treatment easier.  A week after it was placed, I was diagnosed with a blood clot from my elbow to my collar bone.  They had to remove that port and place a new one on the opposite side and then remove the blood clot. Because of my susceptibility to blood clots I would now have to take shots 2X a day until my port was removed.  I received chemo for 2 and ½ years including more than 30 spinal taps and I SURVIVED!

Becoming part of Hunt for Heart has meant the world to me.  What started out as an opportunity to do something I had not been able to do for some time (I could not shoot because of the chance of blood clots). Ended up giving me soooo much more…FRIENDSHIPS!  With being out of school half of my freshman year and my entire sophomore year and many absences my junior year, true friendships were few.  Nobody quite understood what it was like to be different and have some limitations. The friends I met at Hunt for Heart have truly become family.” -Dustin Fontenot

Kenna Mae

“Hey guys! My name is Kenna Mae Horton! I got diagnosed with Hypertrophic Cardiomyopathy (HCM) in 2012. I was in third grade at the time. At that point my cardiologist was aware that I had the gene for HCM but I was still allowed to participate on my traveling basketball team. My family went to Mayo that next year and I got the news I wouldn’t be able to play anymore sports for most likely the rest of my life. My two brothers also got diagnosed around the time I did. This was a huge adjustment for my family, but luckily we got through the hardest part. We moved to Quanah in 2015 and that was the best decision we ever made. As soon as I got to Quanah I was welcomed with open arms and I got super involved in 4-H. At that time I showed livestock and did a couple of public speaking events. Now I am the President of our local club and I’m a district officer. I absolutely love 4-h and everything it stands for. Not being able to do sports was extremely hard going through elementary and junior high, but once I got involved in extracurricular activities like 4-H I finally felt like I was home. I’ve met so many friends through the 4-H organization and I’ve learned so much about myself through public speaking and leading others. We started getting involved at Texas Children’s Hospital a couple of years later and that’s when we met Corey. She wanted to get us all involved with Hunt with Heart immediately, but unfortunately they couldn’t find any other girls campers so my brothers went to that Spring camp. Two years passed and I had another opportunity to go to the Fall camp. I was extremely nervous going in but as soon as I was there I felt instantly relieved. Allison and the rest of the team work incredibly hard to make everyone feel at home and it paid off. The other campers and junior counselors at the camp made the experience that much more fun! I got really close to my junior counselor, Madeline Woodall, and the other girl camper, Broghan. Some of my favorite memories from camp are the late night talks I had with those girls. The second day I went on the big hunt. I was really nervous but my guide, Case, believed in me so much that I knew I would succeed.  Although my brothers got diagnosed with HCM along with me I continued to feel kind of lonely when it came to not being able to be “part of the team” and I felt like none of my friends really understood what I was going through. When I met friends through HWH it felt like I could talk to these people that have gone through a lot of the same things I have. I am so grateful for Hunt with Heart and all the opportunities it has given me. My memories from the Fall camp are unforgettable and I can’t wait to see all of my HWH fam again!!!” -Kenna Mae Horton

Gavin

Gavin Morgan wasn’t born yet when doctors diagnosed him with a large ventricular septal defect (VSD), a hole in the wall of the ventricle of his heart. His parents, Wade and Heather were referred to a team of prenatal specialists at Texas Children’s Hospital who kept a close eye on her and Gavin for the remainder of her pregnancy. At birth, doctors located what appeared to be an aneurysm near Gavin’s heart that they thought might contribute to cardiomyopathy, which is death of the muscle tissue of the heart. Gavin was sent home, but within six weeks, he was back at Texas Children’s when his parents were concerned about his frequent “panic” crying attacks. After tests, the doctors told Heather that Gavin’s heart was three times its normal size and that he would need a heart transplant to survive.  It’s been almost 14 years now that Gavin’s had his gift of life! A perfect stranger decided to be an organ donor, the day that was the worst day of their life. We are forever grateful to all organ donors and their families.

Since transplant, Gavin has had many obstacles in his health. He had post-transplant lymphoma at age 5, knee surgery at age 8, lots of ENT and GI issues. Keeping Gavin healthy has been somewhat of a challenge. We know where to take him whenever we need care, that’s at Texas Children’s Hospital. Through the many departments we see for specialist, we found out about Hunt with Heart. This organization has been a blessing to Gavin’s family. He has been able to meet new friends that face medical challenges just like him. While we are in patient at the hospital the team at HWH come to visit Gavin. They brought him books, art and craft projects and have helped assist with parking costs. It’s a delight to get visitors from HWH since our family lives out of town.

Gavin has enjoyed taking fishing trips and hunting trips with kids like him. As Gavin grows into a young man, these relationships are extremely necessary to know he’s not alone. Being a teen is hard enough and feeling secure in a group like HWH definitely puts his mind at ease.  Many kids his age do not understand all he’s been through. Most of his local peers do not know the health challenges he faces daily due to side effects of medication and different therapies he does. HWH allows our family to meet other families going through similar trials this makes us all know we are not alone. We love being connected to this awesome organization that simply bring us all together knowing we are never alone with the struggles and challenges life tosses at us! Bringing us back to nature, surrounded by others who “get it” makes us happy at heart!!

Thank you HWH for all you do, have done and will continue to do as Gavin grows into a young man!

Grant

Grant was born in Singapore. We found out shortly after his birth he had a heart murmur and his diagnosis quickly escalated to needing an immediate coarctation repair.  We made the decision to stay in Singapore for his surgery rather than risk flying back to the United States. Grant’s surgery was successful and we moved backed to Texas about 6 months later and met with Dr. Dreyer at Texas Children’s Hospital. Grant has Aortic Valve Stenosis and will need a valve replacement someday, but he has also had two valvuloplasty procedures. After years of excellent care at TCH by his doctors and nurses, Grant was invited to attend Beaver Creek Ranch in 2018, and for the first time met other boys who also deal with annual (or more) doctor visits, surgeries, medication, and scars. Although Grant is fortunate enough to live an active lifestyle by playing water polo and being in his high school marching band, Hunt with Heart has given him amazing opportunities to experience confidence and success. Grant just turned 18 and will be graduating from high school this May. He plans to attend college next year and has received four acceptances but has not made a final decision.

William

William was born August 25, 2006 with a combination of congenital heart defects referred to as Hypoplastic Right Heart Syndrome, which is fatal within the first weeks of life without surgical intervention. William had his first open-heart surgery at five days old. After leaving the hospital at two months old, we quickly headed back for a second open-heart surgery at six months old. William’s last open-heart surgery was when he was three years old. After William’s last open-heart surgery his body rejected the procedure (the new pressures and oxygen levels in his system) and William suffered from chronic pleural effusions which kept him in the hospital for nearly two years off and on (more on than off) and landed him on the heart transplant list. In addition to low oxygen levels, William suffers from PLE (protein losing enteropathy, short stature and many other complications due to high pressures and low O2 levels). William’s journey, like others is nothing short of a miracle. During the two years at Texas Children’s Hospital William met Jordan and his family (Allison’s brother from Hunt with Heart). Jordan was William’s inspiration, on days Will didn’t want to walk or felt down – Jordan would roll by Will’s room with his big Syncardia heart pump and encourage Will to get up and get moving. This is how we were introduced to Hunt with Heart. William participated in the 2018 October hunt and got his first ram, he felt included and for the first time ever, like a “real” kid – in his words.

Kaston

Kaston was born on November 22, 2002 in Amarillo, TX.  He was diagnosed with Tricuspid Atresia when he was 1 day old.  All of his cardiac care has been at Children’s Medical Center of Dallas up until the last few months.  He had his Glenn at 6 months old and his Fontan at 22 months old.  Then he had a fenestration closure around age 4.  He is now a junior in high school, driving, working, dating and just being an all-around normal teenager!

We became involved with an organization called Mended Little Hearts in 2009 and started the Amarillo chapter.  We were attending a Mended Little Hearts national conference at Texas Children’s Hospital a couple of years ago and Hunt with Heart had a speaker there and did a presentation for all of the parents about the organization.  I stopped by their booth and met Allison.  I knew that this would definitely be something that Kaston would be interested in being a part of.

Kaston has always been adventurous and had a great love for the outdoors since he was little.  He had his first camping trip and boat ride when he was a couple of months old and has grown up going to the lake and camping.  He started wake boarding when he was just 4 years old.  He has participated in all kinds of active things throughout his 16 years of life.  He earned his blue belt in karate, did competitive indoor rock climbing, played soccer, basketball and t-ball, but his love has always been the outdoors.  He finally got clearance to go to higher altitudes and started snowboarding when he was 12.  For his 15th birthday, we took him scuba diving in Mexico…of course with cardiology approval first!  He has definitely not been your average single ventricle patient!

His dad’s background is law enforcement and has been an avid hunter & fisherman his entire life and our kids have followed along in his path.  Kaston loves fishing and hunting and is currently a part of the Randall County 4H Shotgun program where he competes in trap, skeet & sporting clays.  His sister prefers archery!  They have both grown up in blinds, whether it be bird hunting, hog hunting or deer hunting.  It’s been a great opportunity to teach them anatomy & physiology since both of our kids have been homeschooled for most of their lives!

After talking to Allison about Hunt with Heart and what this program provides for kids like Kaston, I knew that we needed to get him involved somehow.  With us living so far from Houston, I knew it would be a little challenging, since we are about 10 hours away.  But I gave Allison our info, thinking that maybe just by chance, Kaston might be invited to attend a camp someday.

Well, a spot opened up for him last minute for the Fall 2018 camp and Kaston & his dad were able to make the trip down south.  And it was life changing for both of them!  I think his dad had just as much fun as Kaston did, because he got to share such an amazing experience with his son on a different level, because of Jim & Jo Anne’s generosity and all of the people involved with Hunt with Heart and Camp Beaver Creek.  It just blew them away.  And of course, Kaston’s dad made quick friends with Joe because of his many years in law enforcement.

Back around that time, he had his scheduled 6 month work-up in Dallas and they wanted to do some liver testing (as single ventricle patients will typically have some liver scarring)  HIs initial work-up showed that he was having some liver issues and that he had progressed further along in Fontan Associated Liver Disease (FALD) than what they had expected.

We started asking around about who had the most knowledge and experience with FALD and learned that TCH has a dedicated Fontan program with close liver monitoring and were actively involved in some study trials with the top researchers in the country for this newfound problem.  We also found out unfortunately that our insurance was no longer going to be accepted in Dallas.  So, we were looking to change providers anyways.  With our knowledge of TCH being THE top-rated cardiac center as well as a strong GI/Hepatology program, we – along with Kaston – decided to go ahead and transfer his care to Houston.  It was reassuring knowing that we had already established some relationships so far from home through Hunt with Heart, so it made the transition to a new center a little easier.

In May 2019 we were graciously able to meet with Dr. Dreyer and Miss Corey, who tirelessly helped us get all the many appointments scheduled.  We also were able to meet with a liver specialist and have additional liver testing done along with extensive cardiac testing.  We are so grateful to Corey and the work she does not only for her patients at TCH, but for Hunt with Heart as well.  We are so extremely grateful to Dr. Dreyer and his team for taking Kaston on as a new patient and helping us get everything transferred and being aggressive in his plan of care.

We know without a shadow of a doubt that that one chance meeting with Allison at a conference we both happened to be attending opened up the possibility not only for Kaston to become a part of the Hunt with Heart family, but helped us ease into transitioning his care over to Texas Children’s Hospital.  We are so blessed to be considered as part of the Hunt with Heart family.  I hate that we are so far away because we do miss most of the events but have made a promise to make it down there as much as possible, especially for the Sporting Clays event!

Josh

Joshua was born on August the 17th, 1994.  He was diagnosed a day later having a single ventricle and a narrowing in his aorta.  His first open heart surgery was a week later.   He has had a total of 7 open heart surgeries to date.   God has brought him back to life twice after his heart stopped beating.   He is truly a miracle!   Joshua loves sports and most important he loves God!  He is currently  25 years old and being a missionary for the next 9 months.  Please continue to pray for him!

Kyle

I’m Kyle Rayburn I’m 22 years old. I was born July 23, 1996, with hypo-plastic left heart syndrome. I’ve had numerous open-heart surgeries and heart catheterizations starting from just a few weeks old. When I was 7, I was also diagnosed with PLE (Protein losing Enteropathy). Finally, on November 22, 2014 I was blessed with a new heart. Now I have been post-transplant for almost 5 years. Now I’m able to do the things I love without getting tired, shot of breath, and I over all feel great.

Conner

Conner was born in 2002 with a congenital heart defect called Hypoplastic Left Heart Syndrome. His diagnosis was made about 24 hours after birth when he was life flighted to Houston. He was very quickly transferred into the care of TX Children’s Hospital. At 5 days old, he had his first surgery called the Norwood, and then another surgery at 7 months old called the Bi-Directional Glenn. His final planned surgery was performed just before his 4th birthday and was called the Fontan. These surgeries did not correct his heart nor make it normal, but basically worked with what he’s got and gave him a unique circulation. We were told that someday he would need a transplant, and it would probably be as a young adult. He has done very well for the past 13 years since his last surgery until the beginning of May 2019.

On May 1, he was not feeling well, and it appeared to be something viral. We noticed that his coloring was a little off, but figured it was because he was sick. By the next day, he was wanting to see his pediatrician. At that visit, his oxygen saturations were a little lower than normal, and he still looked cyanotic. Arrangements were made to see the cardiologist within the next week. Unfortunately, the morning of May 5 his condition had become worse, and the decision was made for Texas Children’s transport team to come get him from a local ER. His father accompanied him on the transport plane, and I drove to Houston to meet them shortly after his arrival at TX Children’s where he was admitted to the CV ICU. A diagnosis of heart failure was very quickly made, and we began the process of transplant evaluation. On May 20, Conner was discharged to go home with medical support while waiting at home for transplant.

However, at the end of May, he was readmitted due to his condition worsening again. Because his heart failure became so serious so fast, it wasn’t long before the decision was made that he would require a ventricular assist device to bridge him to transplant. On June 6th, Conner received his VAD and is recuperating well from that surgery. Conner has been approved for transplant and is on the transplant list, although he is on inactive status until he is fully recuperated from the VAD surgery.

As we go through the process of recuperating from the VAD and awaiting transplant, we will continue to have extended stays in Houston and travel back and forth between our home and Texas Children’s Hospital for medical appointments and care. His dad will continue to return home and work as much as possible. Our other two children continue to be taken care of by friends and come to visit often. We are so thankful for all the love, support and many prayers that Conner and our family have received! God has definitely provided us with amazing medical care and incredible loving family and friends!

Obviously, our family has a lot of challenges right now, and we really treasure all who support us! Conner joined Hunt with Heart in 2014, and we were blessed with this awesome group of people being added to our support system! Conner attended his first hunt at Beaver Creek Ranch in 2014 and had a blast meeting other kids with similar heart conditions and killing his first ram. He had always spent a lot of time outdoors with his father and was beginning to hunt with him, but this was a new hunting experience that began a lot of new opportunities and relationships for the entire family. Since then he has gone on other hunts around Texas and attended some of the other events hosted by Hunt with Heart, such as the annual picnic, painting with a wildlife artist and a nerf war get together! We have also enjoyed these opportunities to visit and make friends with other families going through life with similar health issues and to get to know all those who work with Hunt with Heart. All who work and volunteer with Hunt with Heart have over the past 5 years taken the time to get to know Conner and our family, frequently checking on how he was doing. Now that he is at such a huge turning point in his health, we are so grateful that Conner is a part of this wonderful organization and appreciate their love and support at this time!