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Meet our 2021 National Cuisine for a Cause LIVEr Champion, Sophie

Imagine receiving three difficult diagnoses at the age of three – primary sclerosing cholangitis, autoimmune hepatitis, and Crohn’s disease. At the age of 11, after increasing lab trends, I was placed on the waiting list for a liver transplant. With a low Pediatric End-Stage Liver Disease (PELD) score, we knew my case would not be prioritized. After a year on the wait list, my liver team and I started exploring the option of a living-donor liver transplant. Dozens of family, friends, and even strangers were willing to donate part of their liver, but none were the right match. Over the next few years, my symptoms worsened as my liver deteriorated.

On December 30, 2017, after over four years on the waiting list, the long-awaited call came that a liver was available. My transplant surgery began just before midnight on New Year’s Eve. That night, my surgeons saved two lives by performing a split-liver transplant – the liver was split and shared between a 21-month-old boy and me.

After my transplant, I endured one additional surgery and spent two weeks in the hospital before coming home. The year post-transplant was difficult and not without complications, but because of my donor and their family’s selfless decision, I am healthy.

My personal experiences in the medical field inspired me to pursue a career in medicine and I am currently a pre-med student at the University of Utah, studying biology and conducting pediatric clinical research. I am beyond grateful for this opportunity – my donor gave me the chance to plan for the future and to accomplish goals I once never dreamed possible.

The continuous support of the liver community and my liver team helped me during the long wait for a transplant and the difficult post-transplant recovery.  I am incredibly honored and grateful to give back to this amazing community by volunteering, advocating, and raising awareness for organ donation and liver disease. The individual and collective efforts of all of us – patients, doctors, nurses, supporters, researchers, families, caregivers, and volunteers – are essential to achieve the American Liver Foundation’s mission to end liver disease.

Click here to make a donation on behalf of Sophie.


2020 Local Liver Champions

                                                                                                                         

Brian Bourgault

I first noticed I had difficulty with my memory and learning new concepts in the fall of 2015, I attributed them to my age. In early 2016 I began to experience several unusual symptoms, a loss of appetite, lethargy, difficulty concentrating. A few times while driving home I took a wrong turn. All the symptoms that I know now to be of liver failure.

 

 

                                                                                                                                                                                                                  

David Burns

In 2014, David was struck with Stage 4 liver disease. After several months of intensive care and dozens of procedures to keep him alive, David was given new life with a donated liver on January 26th, 2015. If it wasn't for the amazing work of miracle doctors, nurses, staff at UCLA hospital, David would certainly not be with us today. If it wasn't for the incredible prayers of his supportive family and friends the same would be true.

 

                                                                                                                                                                                                                             

Jay Beyer-Kropuenske

Never in my wildest dreams would have thought I would have liver disease.  I began my journey with liver disease in 2011 and despite ongoing treatments and medication, I ended up being hospitalized in May of 2012. I ended up in Intensive Care Unit (ICU) for 49 days with liver and kidney failure in May 2012 experiencing Hepatorenal Syndrome – Type-1. This proves that anyone can find themselves victims of liver disease.  

 

Frank Melanson

Shortly after a deployment to Afghanistan with the Army, I went to a VA hospital for hernia surgery and became jaundice right after. I returned to the hospital, thinking it was a complication of the surgery, and turns out it wasn’t. I was later diagnosed with PSC, a rare liver disease. The doctor referred me to a specialist at Hartford Hospital.  With the help of my new doctor, we were able to get it under control with medication, and for years all was well. In 2014, I was married and had my first son.

 

Pam Stubbs

Pam Stubbs from Arizona had felt bad for so long, she forgot what it was like to feel good.  She worried that her heart was causing her fatigue and shortness of breath. But it was Pam’s liver. After a battery of tests, she learned from her Mayo Clinic team that she needed a liver transplant, a message that stunned her, given her history of excellent health.