Meet our 2020 National LIVEr Champion, Philip Kennelly
Philip was born in July 2013, and he was seemingly healthy at first. He had some jaundice in his eyes, but we were assured this was normal and it would soon fade away. Finally, at six weeks old, I insisted that this was not going away, and they finally retested his bilirubin. We received a call later that day telling us to go to the emergency room. After many tests, and a biopsy, it was determined that Philip had Biliary Atresia. At eight weeks old, he underwent a procedure called a Kasai, which serves as kind of a “temporary fix” that allows bile to drain from the liver.
Philip spent the next two years in and out of the hospital. He couldn’t sleep at night and would scratch himself so much that he would have open sores all over his body. He also developed portal hypertension, which caused him to have esophageal varices and GI bleeds. In February 2016, Philip had a GI bleed, only a week after an endoscopy showed he did not have any varices that looked concerning. It was determined that with the unpredictability of his bleed and the itching getting even worse, he should be listed for a transplant. But according to his blood work, his PELD score was not high enough to get him transplanted any time soon. His team suggested looking into living donation, so we discussed it as a family and we decided that Philip’s dad, Dan would get tested first. And he was a match!
On May 10, 2016, they were wheeled into the operating room and our lives were forever changed. Both are doing great since the surgery. Dan sometimes forgets he even had surgery. Philip has had a couple of bumps along the way, but the transplant has allowed him to start kindergarten this past year and keep up with his peers. He is a typical six-year-old boy who loves cars and playing with his brother. You would never know all that he has been through if we didn’t tell you.
– Kim Kennelly, Mother of Philip
2019 Rocky Mountain LIVEr Champion, Thomas Cusic
Throughout my adult life I struggled with alcoholism. This disease destroyed me. In May 2016, I was given a 30% chance to live 90 more days. In 2016-2017, I had many ups and downs. I had terminal liver cirrhosis and took my last drink on March 13, 2018, but it was too late. The doctors told me my only option was to go into palliative care/hospice. It was time to sign the papers and go home. I refused and fought with everything I had. I wanted to be here for my daughter’s milestones in life. I dreamt of taking my grandkids fishing, camping, and creating lifelong memories. From March to October, I continued my fight, but my body was failing. I went to my PA in Colorado Springs, Jamie Thompson, and she sent my file to the transplant team at Presbyterian/St. Luke’s Medical Center. Miracles started happening. I was scheduled for an interview with Dr. Clark Kulig, who was the 1st doctor that listened to me and gave me hope. Dr. Kulig evaluated me and said I could call when I felt like I couldn’t make it anymore.
On November 9th, I called. Nunu, liver transplant coordinator, answered and I was admitted into PSL. Through the great work of everyone involved, especially Mel, liver transplant coordinator, I was placed on the transplant list on November 19th. On December 10th, I was taken in for my transplant.
Thanks to an unknown organ donor, who gave my daughter’s and I the greatest gift, we will be forever grateful. Dr. Thomas Heffron, surgeon and my HERO, performed my liver transplant along with countless others. I am especially grateful for all the prayers and to God above all for leading me to the Presbyterian/St. Luke’s transplant center.
2018 Rocky Mountain 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 – mom of Manny
2017 Rocky Mountain 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
2016 Rocky Mountain LIVEr Champion, Charlie Richardson
Charlie Richardson and his twin sister were born 7 weeks premature in May 2005. When he was 3 days old Charlie developed necrotizing entercolitis, which affected his underdeveloped intestines, and he needed 2 surgeries to remove dead bowel tissue. He was placed on TPN (total parenteral nutrition or IV fluids) to receive his nutrition and was expected to be home within a few weeks. Unfortunately his body did not heal as doctors expected and he spent the next 4 months in the NICU getting most of his nutrition from IV fluids. This long term use of TPN put a strain on Charlie’s liver and caused scarring which we were hoping would heal over time. This scarring eventually caused Charlie to develop portal hypertension. As his blood could not freely flow through his liver, it began to back up in to his spleen and caused internal bleeding. This resulted in Charlie’s spleen becoming abnormally, and increasingly, large. His sports activities would require him to wear a protective shirt to prevent damage or rupture of his spleen.
In 2013 Charlie got off the bus from school on his way home and vomited large amounts of blood. He was taken by ambulance and then by Flight for Life helicopter to Children’s Hospital where he received an upper endoscopy and banding procedure to cut off blood flow from esophageal varices that had developed due to his portal hypertension. The blood had nowhere to go due to the pressure in his portal vein so it found other routes through his esophagus. This procedure was the first of 9 scopes Charlie had over the next 1 1/2 years. After this time it was determined by his doctors that Charlie’s liver was getting progressively worse and a liver transplant was his only hope. Within a short 2 months we got the call that a liver was available for Charlie. Words cannot express what we were feeling when we got that call and we are forever grateful for the selfless gift he has been given.
Since Charlie’s 2014 transplant he has been doing amazingly well and his new liver is working perfectly! His smile, through the pain and recovery that followed, continued to shine through. He is a model of strength, joy, courage and light for all who know him. He is our hero. We trust that God has a plan to help Charlie live the life he envisions in his spirit and this is demonstrated each day that he continues to thrive. By Cathy Richardson – mother
2015 Rocky Mountain CO-LIVEr Champions, Xavier Manzanares & Zoey Donathlan
I was scheduled to be induced November 13th 2012. But on November 12th our family was dealing with the death of a very special lady, our aunt. She had stage 4 lung cancer we had been up all night. At 8:22 AM she took her last breath. By 10:30 am my contractions were coming every 5 minutes I called my doctor and naturally she said to come in to the hospital. We were filled with so many emotions sad, happy, unsure, and tired and it was all going so fast. 5:28 pm Xavier was born. Within 45 minutes to an hour he was still purple, and not wanting to eat. The nurse’s said they wanted to take him to the NICU for an x-ray, check up and maybe some oxygen. The x-ray showed Xavier had an enlarged heart. The doctors called in a cardiologist from Presbyterian Hospital to perform an echo and they needed to keep him on oxygen in the NICU. The echo showed a valve was not closed like it should have been; oxygen and time would close it up, so they thought. Xavier was not getting better and his lab work was also not looking so good. The doctors ordered an ultrasound as the tech was looking around she noticed his liver looked very different. By this time the orders were in to transfer Xavier to Presbyterian Hospital for further testing. Test after test after test. Then the worse thing for any parent to hear was being told to us. If Xavier doesn’t get a liver transplant he will not make it. I couldn’t believe what I was hearing. So once again we were transferred to Children’s Hospital Colorado. Xavier was diagnosed with an AVM of the liver. This is an abnormal connection in blood vessels between arteries and veins. This was causing liver failure, heart failure, hypertrophic cardiomyopathy, blood disorder, pulmonary hypertension. After 3 surgeries and steroid treatments Xavier needed a liver transplant. On Jan 1st, 2013 he was listed for a liver transplant. Jan 9th 2013 around 1:00am we got the call. We have a donor. We were not sure how to feel, on one hand our son is going to have a second chance at life and on the other; a family is dealing with the death of their loved one. It was definitely a bitter sweet moment. Surgery began around 9:00pm and did not get done until 7:00 am the next morning. It was the longest night ever. We learned that Xavier lost about half his blood during surgery, required blood transfusions, and the surgery was not an easy one nor were the next couple days going to be either. Xavier had a long visit in the PICU with some very scary moments from code blue to fevers. Finally in May 1st 2013 Xavier got to go home for the very first time ever. Since his first stay at Children’s he has had a few other issues such as hip dysplasia, hernia, tonsils, tubes in his ears, a g-tube, and some developmental delays. He is now 2 and a half years old growing, learning, and living. I wouldn’t change any of it for the world. He is my little miracle thanks to the help of our donor, our doctors, our nurses, our social workers, transplant team, Auntie Anna and God. I never realized how many people are affected by liver disease and how much damage it can cause. I hope that one day Xavier’s story may help doctors to understand this rare disease. It is an honor to have Xavier as the American Liver Foundation Rocky Mountain Division’s Liver Champion. By Melissa Manzanares – mother
March 13, 2013, when Zoey was about 16 weeks old, we notice that our child started to look sick to us. Her tummy was really big, but her legs and arms remained thin. Her urine became dark and her stools started to become pale and the consistency of clay. We took her to our local emergency room where we were told that her bilirubin count was very high and transferred to Children’s Hospital Colorado. That following week she was diagnosed with a rare liver disease called Biliary Atresia. Biliary Atresia is a congenital absence of bile ducts and occurs in 1 of every 15,000 births. At the time of diagnosis, cirrhosis of the liver had been too advanced for Zoey to get a Kasai. At that time, Zoey’s liver team recommended a liver transplant by the age of 1 for survival. Prior to transplant Zoey fought the many complications of Biliary Atresia including failure to thrive and grow, the inability to absorb vitamins, itchiness, ascites, portal hypertension, an enlarged spleen, and hypoglycemia. Though she was fatigued battling these challenges, she remained a happy and outgoing baby; smiling and playing every single day. Zoey had her life saving liver transplant in July 2013 and continues to grow and get healthier with every single day that passes. By Jelene Donathlan- mother