2018 National LIVEr Champion, Manny Estrada And His LIVEr Hero, Aaron Whalen
In 2010 Manny was only two & a half months old when he was diagnosed with biliary atresia. A very rare disease of the liver & bile ducts that occur in infants. 1 in 15,000-20,000 kids are diagnosed with this disease & it is most common in girls. Very soon after he was diagnosed he had his first surgery called the Kasai procedure. His first years of life were though he was frequently having to get flown out to the Children’s Hospital. It seemed like something was always wrong. Year after year things didn’t get any easier. Many hospitalizations, therapy, a long list of daily medicine, regular bloodwork & doctors’ appointments are only what we consider to be a regular thing. I always knew the goal was for him to not need the transplant until he was older & stronger. The year of 2017 was a tough one, several hospitalizations later at his December follow up appointment 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. We were supposed to go back to Denver in February of 2018 for the transplant evaluation to be done so he would finally be put on the list, however when January 2nd came around we had another trip to our local emergency room, resulting in another flight & hospitalization at Children’s. While we were there they were able to do the several tests for the evaluation that needed to be done before he could be put on the waiting list. On January 16th we received the news that he was on the transplant list. We knew the wait could be anywhere from a month to half a year. On February 1st only 2 weeks later I received the call. I could hardly believe what I was hearing. They told me there was a donor for Manny. I immediately accepted the liver & asked when they needed us up there. She told me if we could be up there the following Monday. I called my husband to give him the great news, but I was speechless, I couldn’t talk through all the tears of joy. I sent him a text message right after & he could hardly believe the news. We headed up to Children’s the following Monday & waited around for the big day. February 7th was the big day. While we were in the hospital waiting for his recovery we sent the donor a thankyou card we were & will always be extremely thankful for what he did. We received a letter back & in it was his phone number. This made us so happy we called him almost immediately. We got to finally meet him & he was just like we imagined & more. We expressed how thankful we were with what he had done & words will never be enough to repay him for what he did. It’s crazy to think a complete stranger would do something like this for a child they might not get to meet. He is an angel in our eyes & the bravest of them all. Life hasn’t been easy, but it sure has been worth it. We have faith that with this new liver he will have many years ahead of him. I wish the best for the donor & always have him in our prayers. Our biggest hope will be to get the word out to more & more people so that those who are willing to donate a piece of their liver to a child hopefully will. I myself would love to pay it forward & donate. To me this will always be the most amazing story ever told.
By Karina Estrada – mom of Manny
2018 LIVEr Hero
I moved to Colorado in June from Wisconsin after graduating with a B.S. in Psychology. I fell in love with Colorado instantly. One day I was reading an article and it mentioned that you can donate a piece of your liver to someone and it would grow back. I was amazed at that idea. My mother donated a kidney to a family friend and she really felt good about that whole process. Nobody I knew needed their life saved but I thought now would be a good time in my life to donate. Ultimately, I thought it would bring a lot of meaning to my life and it would help me feel really good. (It did). I went to the hospital and met the team. The liver transplant team at UChealth is incredible as well. They asked if I had any requests and I said that if it was possible I wanted to donate to a child. This turned out to be great because donating your left lobe isn’t as risky and you don’t give up as much of your liver. The doctors did their tests and found that I was healthy enough to donate and that’s when we found the recipient and the date was set for surgery. People would ask me every day why I was doing this, and it boiled down to one simple thing. I’ll be uncomfortable for a few weeks, but a child will have the opportunity to live an entire life. The more I thought about it the more I knew this was something I wanted to do. The surgery went very well for me. I recovered very quickly. 30 days after the surgery I had gone for a short 15-mile bike ride.45 days after I was able to meet the recipient. That’s when it hit me. Getting to meet that family was easily the most powerful day in my life. I now have a very unique connection with the recipient and his family. As I hugged him for the first time all I could think about is more people should do this. Kids deserve a chance and if we all get together we can get these kids off of the waiting list for organs.
By Aaron Whalen
2017 National LIVEr Champion
Claire and Peri 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