Our Story

Our world was turned upside down in 2012 when our sweet son Jaxon was diagnosed with a rare kidney and liver disease called Autosomal Recessive Polycystic Kidney Disease. Jaxon also was diagnosed with Congenital Hepatic Fibrosis which goes hand in hand with his Autosomal Recessive Polycystic Kidney Disease. At diagnoses Jaxon was only 13 months old. Along with both of these diseases Jaxon was also diagnosed with Caroli’s Syndrome in 2014. Caroli’s is a rare genetic condition in which bile ducts in the liver are wider than normal that can cause a life threatening infection. We imagined we would be walking down one path, only to find out that we’d really be walking another.

Jaxon is now a 12-year-old who is a big brother, bold, funny, kind, thoughtful and adventurous. He truly lives his life to the fullest and never lets his condition hold him back! Jaxon is a bookworm currently in the fourth grade who participates in boy scouts, loves to run, swim and camp! 

Jaxon has his ups and downs with this disease. In 2017 Jaxon participated in the first ever drug trial for ARPKD/CHF!  Through all the countless pokes to draw blood, procedures, imaging, doctor appointments and hospital stays; he handles it all with bravery and grace. Seven medications every single day keep him healthy, happy and alive, along with weekly blood pressure checks and a daily growth hormone injection. 

Over the past 8 years, Jaxon’s body has been resilient, finding new pathways for his body to compensate for his failing liver. Unfortunately despite this, his liver continues to decline. Recently Jaxon’s doctor advised us to prepare for a liver transplant in the next year. We always knew that a liver and/or kidney transplant would be part of Jaxon’s future, however; it doesn’t make it any easier to hear. Sadly, he is starting to feel the effects of a failing liver now. Jaxon suffers from pain, nausea, loss of appetite and difficulty sleeping. These are symptoms he is dealing with on a daily basis. While his kidneys are doing well right now, we’ve been told that it’s very common for immunosuppression medications to cause ARPKD kidneys to fail, resulting in the need for a kidney transplant not too long after the liver transplant. While we are hopeful, we are also aware a transplant is not a cure for liver or kidney disease, but a treatment to improve Jaxon’s overall health and provide him with many more amazing years of life. 

Jaxon will start a new journey after his transplant; he will be on immunosuppressant medication for the rest of his life so that his body does not reject the new liver. He will continue to endure doctor visits, blood work, imaging amongst other tests to make sure his transplanted liver continues to function properly. All of this and so much more to keep Jaxon’s liver strong for many years to come and to continue keeping him happy, healthy and alive!

Our family has partnered with COTA to raise money in honor of Jaxon to assist with a lifetime of transplant related expenses. The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.

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