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!

Hayden

Hayden was born 7 weeks premature weighing in at 4 lbs ½ an ounce on June 5, 2002. The delivery room nurse mentioned a heart murmur prior to his birth. Hayden was diagnosed with aortic valve stenosis the day after he was born. He had his first heart catheterization balloon at 8 days old and his first open heart surgery to replace his aortic valve at 6 years old. We found Texas Children’s Hospital and Dr. Charles Fraser by the grace of God. A simple email to Dr. Fraser with little hope of a reply turned in to the best medical decision we could make for Hayden. Dr. Fraser performed Hayden’s second open heart surgery, an aortic resection, at 11 years old. At 13, Hayden underwent his third open heart surgery, the Ross Procedure performed by Dr. Charles Fraser. Hayden has undergone numerous catheterization procedures over the years. The latest performed by his wonderful Texas Children’s cardiologist, Dr. Aimee Liou, when Hayden was 16. Hayden is now 17 and will begin his senior year of high school this fall. He plans to attend college next fall to become a firefighter and paramedic with plans to become a careflight medic in the future.
The Transition Team at Texas Children’s introduced Hayden to Hunt with Heart. Hayden loves to hunt and be outdoors. From the moment Hayden arrived at Beaver Creek and met Joe D he knew Hunt with Heart was a perfect fit. He has always had restrictions relating to athletic activity and we are so thankful for the opportunity for him to be able to participate in such a wonderful program with kids that truly understand. Hayden will forever cherish the friends and memories he made at Beaver Creek and DD Ranch.

Thank you to Jim and JoAnn Elzner, The Transition Team, Joe Z, Joe D and the entire Hunt with Heart organization for including Hayden and our entire family in this amazing organization. The work you do for these special kids is truly amazing and life changing.
Thank you again for such an amazing opportunity. Sincerely, Hayden Ince…parents, Terry and JoAnna Ince, and little brother, Landen Ince

Charles

Charles was born 6 weeks premature.  He is our miracle IVF baby!  When he was 3 days old, they found his heart problems.  We were referred to Texas Children’s when Charles was around two months old.  Texas Children’s did all kinds of testing and told us Charles has Tetralogy of Fallot and 2 heart murmurs.    They did surgery when he was almost six months old to repair the TOF and murmurs.  He will eventually have to have another surgery to replace one of his valves.  He has restrictions on contact sports.  But he is very blessed that he doesn’t have to take medications every day and can run, play golf, and work out.  He loves guns and hunting!  Hunt with Heart has been a dream come true for Charles! Thank you Hunt with Heart, for all you do for these kids!

Jakob

My name is Jakob Cobucci or aka “Swamp Donkey”. I got my nick name from my first memorable trip to Hunt with Heart’s Camp Beaver Creek.

I was born on May 22, 2000.  I was a very energetic child, very athletic, and never met a stranger.  In October 2013, I was in a bull riding competition when a bull stepped on my chest. Shortly after that I came down with a common cold and I went to my general doctor. The doctor told us he heard an extra sound and was referring me to a pediatric cardiologist. I had never seen a cardiologist up until this point.  A few days later I saw local cardiologist who told me that I did in fact have a condition called Microvalve Prolapse which I was actually born with and had nothing to do with the bull stepping on my chest. My condition had just made itself more evident as I was getting older. My valve was at 3% which meant only 3% of the blood that went through would invert back through the valve correctly. I was told everything was fine and to continue on with my everyday life as I always had. The doctor told me I could continue bull riding, playing football and everything as I always had, and we would check on it once a year. That year, I went on to win and became the Louisiana Junior High Reserved Bull Riding Champion for the State and went to compete for the National Finals Rodeo for the National title in Des Moines Iowa. For the next three years I did my yearly appointment with the valve every year closing more and more going from 3% to 1% to 5% to closing all the way on its own.

I have played on my Jr high and high school football team since the seventh grade, but days before I started my Junior year, I went for my heart appointment and they discovered something was different. The walls of the left side of my heart had thinned and weakened and no one knew why. I was referred to Texas Children’s Hospital where I met the wonderful Miss Corey Gates and Dr. Denfield. Over the next two years, over multiple appointments they ended up diagnosing me with atria tachycardia. I had to take medication, exercise, and watch my diet. I worked very closely with my doctors and Miss Gates with my condition along with my coaches. I was allowed to play my Junior and Senior year of football while it was limited, I was still able to be a part of the team and able to mentor my younger teammates which meant the world to me. I played free safety, kicker and defensive lineman. I ended up getting Academic All State for defense for lineman.

Miss Corey introduced me to Hunt with Heart. I had the opportunity to take my uncle, who I normally go hunting with, to Beaver Creek Ranch. While there, we went fishing, hunting, (I choose to go into the swap for my hunt which is how I got the nickname “Swamp Donkey) we had confetti egg fights, water balloon fights, and lots of fun. It was so memorable and amazing for all of us. I got to meet some amazing young men and ladies, the coordinators of Hunt with Heart, the owners of Beaver Creek Ranch and a lot of people that helped to put this wonderful organization. By talking to and listening to the other campers, I realized that some of the other kids did not have the same opportunities to play sports and do some of the things that I had in life, and I wanted to make sure that everyone felt included, felt important, and felt that they were a part of everything that was done the weekend that I was there. I would stop, turn around and go meet them and tell them come on and I would walk with them. No one treated us as if we were sick or as if anybody was any different that weekend. It was great!

I graduated high school last year with honors and I’m currently attending Sowela Community College for welding and on the Dean’s List. HwH help to aspire me to be a better person and a role model for others, to always try to inspire others help where you can and try to make a difference in others’ lives. I was so excited to be asked to come back and help with the HwH Organization. I live in Louisiana and so it is hard for me and my family to make a lot of the events, but we try to make as many as we can because this is an organization that truly touches our family and so many hearts and changes so many lives. It is a wonderful organization. God bless Mr. Jim and Mrs. JoAnne Elzner, Mr. Joe, Mrs. Angelica, Case, Tim, Ms. Allison, and everyone that has ever had any hand in it. You are all truly a blessing. God bless you all. Please continue what you do because it matters to so many!

Thank you again from Jakob Cobucci , the Cobucci and LaRocca Family!

Colman

Colman was born March 30, 2004 with a combination of congenital heart defects known as Hypoplastic Left Heart Syndrome, which is fatal within the first week of life without surgical intervention. Colman’s first open-heart surgery, the Norwood Procedure, was performed when he was just three days old. Then he underwent his second open-heart surgery at four months old and his last open-heart surgery was when he was three years old.

Other than hospitalizations for heart surgeries, Colman was a healthy child. He would become tired more easily than his brothers when playing, but if you didn’t know he was a “heart kid,” you probably wouldn’t even notice it. But when Colman was eight years old, he went into heart failure and developed plastic bronchitis. We were then transferred from our home hospital in San Antonio to Texas Children’s Hospital to be evaluated for a heart transplant. Through medication and careful monitoring, we have avoided a transplant at this point and Colman is back to doing well and feeling great. When Colman was invited to go on a Hunt with Heart trip, he was ecstatic. He loves the outdoors and often expressed his disappointment that he was unable to attend summer camp in the Texas Hill Country with his brothers. Colman returned from his Hunt with Heart trip with new friends—heart friends, who were exactly like him. Colman had lots of fun stories to tell about everything from learning to shoot a rifle to tracking and shooting a ram.

Colman is now 14 years old and a freshman in high school. He enjoys tennis, golf, and beating the pants off his brothers in every single game of chess they challenge him to. And he loves to hunt when he gets the chance!

Alex

Alex was born March 1, 2002 at a local Texas hospital about 4 weeks early. I wasn’t able to hold him yet since he had to go get checked because his murmur was louder then normal. He had an echo done and that’s when they came with the news. He was born with several defects to his heart, the main one being Hypoplastic Left Heart Syndrome. He had a multitude of heart issues, heterotaxy single ventricle, complete atrioventricular canal defect, atrioventricular discordance, double outlet right ventricle with severe valvar and subvalvar aortic stenosis, crisscross pulmonary arteries, and coarctation of the aorta. I was able to see him for a few minutes when he was about 8 hours old before he was transferred to Texas Children’s Hospital. Alex had his first surgery, the norwood, at 8 days old on March 9,2002. He did really well and was in the hospital for around 2 months before he came home. He was so little bitty around 4.8lbs. It’s so hard to imagine him that small now. There were a few up’s and down’s but nothing major. When he was 5 months old on July 19 he had a heart catheter done with two stints put in for the coarctation of the aorta. It was suppose to be a short visit but we ended up staying for a week due to a bleed behind his bladder. When he was 6 months old on August 28th he had his second surgery, bilateral bidirectional glenn. He did really well and was discharged 4 weeks later. Alex was a happy kiddo and loved to laugh when he was little. Very active and didn’t have many issues throughout the toddler years. Right before the age of 4, on February 14, 2006, happy heart day, he had the fontan surgery. This one was a little bit more scary since he had a bleed and had to do an emergency open at bedside on the 16th but this strong boy kept on fighting. Up to date Alex is doing extremely well. He joined Hunt With Heart in the fall of 2014. Alex has always loved shooting guns, being outdoors, and 4-wheeling. I always wanted to take him and his sister hunting but time and work just didn’t work well. Alex and his dad went on his first hunt at Beaver Creek Ranch where he was able to shoot his first ram. We were so proud of him and he was even happier. Over the years Alex has been able to go hunting 3 times and loves every trip. Hunt with Heart has provided him with an experience of a lifetime and he will always be a member of this wonderful group. At the strong age of 17 now he is doing extremely well. He loves to go to the gun range to practice, ride his bike, play video games (of course), and learning how to drive. His sister, Liz, has been a big help in his life and he adores her even though they have the sibling fights. Alex has always been a fighter when it comes to his health. He is always trying to do things better and learn as much as he can. His heart is doing awesome with no complaints from cardiology. Alex loves life and can’t wait to see what the future will bring.

Zak

“Zak was diagnosed with hypertrophic cardiomyopathy at the age of 4, and we were told that he wouldn’t make it to his teen years. In fact, the doctor said, “Don’t blame yourself, you have done everything that you can.” The disease was handed down by his father, and while we knew he had the same disease, we weren’t aware of the seriousness of it until that very moment. In fact, being young and naive, the family always told us that “the females were more heavily affected” because Clarence was doing so well. We had no idea – we were shocked. At the same time, Clarence was finding out that his own disease progression was much further along and our oldest, Quest, also had the disease, though not quite as severe. So, we took Zak and Quest (and our youngest at the time, Sutton) and moved out to Houston to become patients of Texas Children’s Heart Team. It was absolutely, hands down, the best move we’ve ever made. When Zak was 8, he was outfitted with an ICD which later proved to be invaluable as it appropriately shocked him four months after implant. It was while we were in the hospital recovering from the shock when we were given the green light to be listed for transplant. All the evaluations and discussions had come down to that particular moment – we knew it was going to happen, but it was still a sobering moment. Zak did well during our wait, though HCM is sneaky and malicious and took away his ability to walk for long distances at a time or eat normal portions of food. He wound up in a wheelchair about five months before transplant, and it was at this time he was bumped to a higher status – we just needed to get him better. 519 days after we were listed, on a Friday evening, we were called – they had found a perfect heart for my son. Zak was transplanted and given a second chance at life on August 31, 2014. He was 10 years old. During one of the many echoes he endured after transplant, the technician asked us if we had heard about Hunt with Heart. We had, seeing as we had spent so much time at the hospital, and very much wanted to be part of such a wonderful organization. The technician told Zak that she would mention his name to Dr. Dreyer, and when he turned 11, he would be eligible to participate in one of the camps that took place in either the spring or fall. Zak was SO EXCITED! He spent years wanting to be ‘normal’ and wanting to participate in activities that required so much more energy than he had – the opportunity to learn and be part of something just absolutely made his recovery that much easier. Zak went on to participate in the fall camp of 2015, and I can say, without a doubt, that Hunt with Heart is part of our family. Our family suffered a tremendous loss last year, on April 20, 2018, when Zak’s father, Clarence Mortensen, passed away suddenly from cardiac arrest. Hunt with Heart reached out to us and we are forever grateful for all the kind words and comfort they provided during this period. Zak is doing so very well – in fact, today is his birthday (2/12) and he is now 15 years old! FIFTEEN! This is someone who was not supposed to make it to their teens… and now, at 15, he’s wanting to learn how to drive, get a job and give back – the same way Hunt with Heart has given to us. Thank you so much for everything!” -Zak’s Mom