LIVEr Champion

why I am an organ donor

2019 Liver Life Walk  Montana LIVEr Champion, Peri Erickson

& Her LIVEr Hero, Claire Erickson

We were overjoyed by the birth of our daughter, Peri, in August, 2013. Unaware of the grim diagnosis which awaited her, we enjoyed our baby daughter to the fullest. Even though we were spending extra time in the NICU due to persistent jaundice, our family felt complete with our tiny new addition. It wasn’t until a gamut of medical tests, a cross-state journey and liver biopsy at Children’s Hospital Colorado that we understood why our baby was unable to clear the yellow that clouded her eyes and marred her skin; she was afflicted by a rare, life-threatening disease called Biliary Atresia.

At 25 days old, Peri underwent a surgery, the Kasai Procedure, to correct the non-functionality of her biliary system in her liver. With little time to recover from her birth let alone process the magnitude of our situation, we jumped right in to being a BA family.

Initially, Peri did very well. However, over the course of the next 3 1/2 years we would experience everything this disease had to throw at us; failure to thrive, an arsenal of daily medications, portal hypertension from a grossly enlarged spleen, varices and internal bleeding, countless hospital stays and frustration beyond compare.

Outwardly, Peri looked and acted like almost every other child of her age! Lacking the necessary medical staff close to our home, the team at Denver Children’s became our family. Between regular checkups, Peri was flown from Montana to Denver on three separate Life Flights, with numerous hospitalizations in between. In January, 2017, the decision was made to list her for transplant. It was during her transplant evaluation that we began to seriously entertain using a live donor to get our daughter the organ she so desperately needed yet would have to wait to get even sicker to receive.

As her mother, I had never doubted and had hoped, in fact, that I would be the one to donate to her. Living liver donation is a somewhat little known medical procedure, among most people, whose implications reach far beyond almost anything else imaginable; living donation allows ordinary, everyday citizens to offer the most profound gift to someone in need; a life-saving organ.

After praying that the evaluation process would be the one thing on our journey which was easy, I was approved as Peri’s donor at the end of February, 2017. Our surgeries took place on the morning of March 21 with myself admitted to UCHealth and Peri at Children’s Hospital Colorado. The morning of the surgery was quite possibly the most wonderful day I have had the pleasure of experiencing; my husband, Justin, was able to walk me the three blocks to UCH in the fresh spring air. The smell of fresh blossoms exuded a sense of hope and well-being among both of us and we knew our lives were changing for the better.

Both surgeries went off without a hitch. I was released from the hospital after five days while Peri stayed at Children’s. Peri underwent a second surgery one week later to correct an arterial issue then launched into her recovery full force. Eight weeks later we are getting comfortable at home in Montana, watching our daughter thrive. The hope and prospective future that living donation has provided us is insurmountable. Without the skill, foresight and commitment of our medical teams at both Children’s and UCHealth we would be stuck in the dark, desolate limbo of chronic disease. We cannot thank our communities, families, friends and medical professionals enough for helping us find the light at the end of this struggle and pray that the opportunity we were graciously given can be allotted to all those who struggle with liver disease.  By Claire Erickson

2019 National LIVEr Champion, Manny Estrada

In 2010, Manny was only two and a half months old when he was diagnosed with biliary atresia (BA). Very soon after he was diagnosed, he had his first surgery called the Kasai procedure. His first years of life were tough as he was frequently having to get flown to the hospital. It seemed like something was always wrong, and things were not getting easier for him.

The year of 2017 was a tough one; he was in and out of the hospital and eventually his doctor gave us the news that he needed a new liver. Even though I knew the day would come, it really hit me. We were very scared and felt helpless. On January 2, 2018, we had another trip to our local emergency room, resulting in another flight and hospitalization. By January 16th, we received the news that Manny was on the transplant list.

Two weeks after being added to the transplant list, I received the call that would change our lives. I could hardly believe that an altruistic donor had come forward. We were shocked that a stranger was willing to donate a piece of his liver to help save Manny’s life.  While we were in the hospital waiting for his recovery, we sent the donor a thank you card. We will always be extremely thankful for what he did. We received a letter back, and in it was the donor’s phone number. We finally got to meet and were able to express our gratitude. — By Karina Estrada, Liver Champion’s mom

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