YOUR LIVER MATTERS
in any celebration
About the Liver Coalition
The Liver Coalition is committed to stopping liver cancer before it starts by maintaining focus across all liver diseases and leading community-wide strategies that prevent, detect, and treat the conditions that drive liver cancer.
Liver Walk Ambassador Jaxxon Naksue
Jaxxon’s Story: Our Little Warrior’s Fight Against Biliary Atresia
Our son, Jaxxon Naksue Douangsouphonh-Johnson, was born on February 8, 2021 — a full-term, healthy baby delivered at 40 weeks. We brought him home excited and grateful… but just three days later, everything changed.
We noticed his stools were yellow-white, and there was blood. We rushed him back in, and he was admitted to the NICU. Doctors believed he had a milk-protein allergy, so he was switched to a special formula. His jaundice levels were extremely high, and he was placed under UV lights for days.
All of this happened during prime COVID, when visiting rules were strict. Only one parent was allowed in the NICU at a time. My wife and I had to switch off — passing each other in hallways, trusting doctors we barely knew while our newborn son lay fighting for answers.
Doctor after doctor couldn’t figure out what was wrong. During one of our visits to the pediatrician, we pushed for both the direct and indirect bilirubin tests. When the results came back, his indirect bilirubin was sky-high — and that’s when he was finally diagnosed with biliary atresia, a rare and serious liver disease.
By eight months old, he was placed on an NG feeding tube. His formula had to be precisely mixed and given at a slow drip so his body could tolerate it. He remained on this tube until his transplant in July 2023. At first he needed an IV pole just to move around — later we transferred the equipment into a backpack so he could keep learning to walk. His first three years were filled with frequent hospital stays, labs, blood draws, and constant monitoring. During his wait for a transplant, we received only one call about a possible donor — and we ultimately had to decline that offer. In October 2022, my wife began the living-donor evaluation. In 2023 she was officially approved, and we scheduled the surgery. On July 27, 2023, both my wife and Jaxxon went into surgery. The first year afterward was the hardest. We spent countless hours traveling to the hospital and attending follow-ups, but Jaxxon never stopped fighting. By 2024, everything began to change. Jaxxon started catching up on all the milestones he once struggled to reach. He learned to ride an e-bike at just four years old, started taekwondo and jiu-jitsu, began school, and finally got to enjoy the simple joys of childhood — swimming, beach trips, boat rides, playing in the snow, visiting Disneyland, and running around the park like any other kid. All the little moments we prayed he’d one day experience finally became his reality. Today, Jaxxon is living a life we once could only pray for. We are deeply grateful — to the transplant team, to his care team, and above all to GOD for carrying our son through every battle. Jaxxon is strong-willed, determined, and fearless. His Laotian middle name, Naksue, means “warrior” — and he has lived up to it every single day since the moment he was born. Thank you for taking the time to read our story and for supporting our little warrior’s journey. Every share, prayer, and contribution means the world to our family.
For a short time after surgery, he stabilized enough to come home. But by around six months old, he developed hydrops fetalis, also known as ascites. His stomach became extremely enlarged, he struggled to breathe, and he was visibly uncomfortable. Despite my wife’s relentless advocacy, it took doctors nearly two months to recognize how serious it was.
She gave him 30% of her liver.
And by the grace of GOD, the transplant was a complete success.
#jaxxonstrong
Ambassador Laura Andrew
Laura’s Story: Fatty Liver Disease
Steatohepatitis
In 2009 I went to the doctor’s office for a routine physical exam. As part of the physical, my doctor ordered labs. I went through the normal physical exam routine and scheduled my follow-up visit for my results. While waiting for my follow-up visit, I received a call from my doctor that my lab work had shown that one of my labs show abnormal results related to my liver function and scheduled me for an ultrasound and more tests. After all the results were in, I went to see my doctor, and during the visit, he explained to me that my ultrasound showed spots in my liver. That is when I received the diagnosis of a fatty liver disease medically known as Steatohepatitis. My provider explained to me that the spots were a result of my obesity. He also explained the different possible outcomes if I didn’t change to a healthier lifestyle. I think the biggest impact was when I heard that it could lead to liver cancer.
After my diagnose, I did what the rest of the world would do. I googled it. That’s when I realized that I did not know much about the liver and its importance. Nor did I know how it contributes to my well-being. I also realized that the resources are limited, including available treatments for my diagnosis. The one common denominator mentioned on the web to prevent more damage was incorporating a healthier lifestyle and weight loss.
Learning this was a turning point in my life; I made a commitment to myself and my family to eat healthier, exercise, lose weight, and practice more self-care. Within a month, I joined a gym, hired a personal trainer, and went to nutrition classes offered by my healthcare provider. I am happy to share with you that at my 6-month follow-up visit to the doctor, I had lost about 40 pounds. Since then, I have lost a total of 65 pounds, and most importantly, my health has improved in every area. The awareness that came through my experience led me to participate in research studies to ensure that Latinos are represented specially because I know that our culture has a very intimate relationship with food. Our families revolve around food and use food as an expression of love, joy, and kindness. I know how hard it is to break that food habit, but I also know how much we lack knowledge in this area and how it directly affects our community.
My experience and the knowledge that I gained from my liver disease make being an Ambassador on the Board of Directors of the Liver Coalition of San Diego a great honor.
Ambassador Thomas Krumenacker
Tom’s Story: Hepatic Encephalopathy
Congenital Hepatic Fibrosis
I was born with Congenital Hepatic Fibrosis that was discovered when I was in grade school. It was originally diagnosed as PKD but later in life while in college when I was hospitalized by a number of bouts of internal bleeding due to esophageal varices they figured out what was really going on.
Years later, at the age of 35 having started a family and building a successful career I began having problems with my encephalopathy. The issue progressed a rapidly forcing me to put my business on hold, robbing me of my ability function as a father and husband. With low MELD scores I was on the transplant list over twelve years but at this time I began looking for other options when my former sister in law Heather stepped up and offered to give me half of her liver. We laughed at first thinking that the odds of a match were far too great as I am O-blood type and she didn’t even know what type of blood she had. Sure enough she was a perfect match, but we weren’t done. After rigorous testing the Physician in charge of my care told me that I had gotten too sick to put Heather’s life at risk and sent me home to put my affairs in order. I was not about to give up, and found another hospital that did the transplant seven months later.
Three months and eleven days after my surgery all three surgeons met me at the finish line of the America’s Finest City Half Marathon. One year after surgery Heather and I ran the Rock and Roll Marathon with matching jerseys saying. One Liver Two Runners.
I understand that my experience is not like that of others and I believe that I am truly blessed, I do not take this gift for granted and use it to find strength on the worst of days and appreciation for the good guys. The days that live in the middle are approached with a smile and excitement for what is to come next.
I am proud to serve as an Ambassador on the Board of Directors of the Liver Coalition of San Diego.
