As October is Liver Awareness Month, A COTA Family is Celebrating Their Toddler’s Now Healthy Liver and Their Donor Family’s Selfless Decision

Teagan Danielle Jones
On December 12, 2017, Elizabeth Puglisi and Zach Jones of Daytona Beach, Florida, were told their baby girl, Teagan Danielle Jones, had a life-threatening disease called Biliary Atresia (BA), which is a rare liver disease impacting one in every 10,000 to 15,000 children.

DAYTONA BEACH, FL – October is Liver Awareness Month, which is the month touted by the American Liver Foundation to raise public awareness of the importance of liver health. More than 30 million Americans suffer with some form of liver disease. This October a Florida transplant family is thrilled to be celebrating their daughter’s now healthy liver and her second chance at life. 

Elizabeth Puglisi and Zach Jones of Daytona Beach, Florida, were excited to find out they were pregnant with their first child. Elizabeth remembers the day their little girl came into this world and instantly stole their hearts, Teagan Danielle was born bright and early in the morning in mid-September 2017. Looking a bit jaundiced, she was wrapped like a glow worm during her short, newborn hospital stay. Once the young family was sent home their lives instantly revolved around Teagan’s schedule, which included eating, sleeping and just being a baby. 

Life was hectic and sleep-deprived during their first few months at home, but that seemed ‘normal’ to these first-time parents who very quickly had fallen deeply in love with their precious baby. 

‘Normal’ took a very sharp turn in another direction in late November during a visit to a new pediatrician (due to an insurance change) who ordered a series of tests, scans and procedures done on Teagan because of some troubling signs and symptoms. On December 12, 2017, Elizabeth and Zach were told their baby girl had a life-threatening disease called Biliary Atresia (BA), which is a rare liver disease impacting one in every 10,000 to 15,000 children. Children are born with this disease and doctors do not know, as of yet, what causes it to occur. A week after the startling diagnosis, Teagan underwent the Kasai procedure, which is sometimes a ‘surgical fix’ for BA babies and a way to postpone a liver transplant. Baby Teagan was released from the hospital to spend her first Christmas at home with Mommy, Daddy and their beloved dogs, Royce and Rari. 


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Children’s Organ Transplant Association (COTA) Kid Teagan Jones, Liver Transplant Recipient

According to Elizabeth, “We understood the Kasai procedure does not always result in the desired outcome and we knew full well that a liver transplant was a very likely next step for Teagan.” 

Teagan was admitted to the hospital on January 11, 2018, due to complications from fluid buildup in her abdomen. This stay was five days in duration. Part of their challenge was never knowing when the next hospital admission/stay would be required to keep Teagan growing and gaining weight in anticipation of a life-saving liver transplant. 

In May 2018 Elizabeth, Zach and Teagan travelled to the AdventHealth Transplant Institute in Orlando, Florida. The top-notch pediatric team at the transplant center performed numerous tests on the baby to try and get a sense of Teagan’s transplant timeline. A transplant social worker there suggested that Elizabeth and Zach reach out to the Children’s Organ Transplant Association (COTA) to learn more about fundraising for transplant-related expenses. Grandma Karen called COTA on May 14, 2018, and asked many good questions about the ways COTA could possibly help. While Zach was still able to work, Elizabeth had to quit her job to care for their sick little girl. Grandma Karen told the COTA Family Services representative that Mom and Teagan were currently at the transplant center undergoing more tests, which is why she was reaching out on Elizabeth and Zach’s behalf to learn more about COTA. Later that same day the family returned the agreement via COTA’s online portal, which meant Teagan was officially part of the COTA Family. COTA’s President Rick Lofgren called the couple on May 17th to check on Teagan and to see if they had any questions about COTA’s support and assistance. 

COTA uniquely understands that parents who care for a child or young adult before, during and after a life-saving transplant have enough to deal with, so COTA’s model shifts the responsibility for fundraising to a community team of trained volunteers. COTA is a 501(c)3 charity so contributions to COTA are tax deductible to the fullest extent of the law, and COTA funds are available for a lifetime of transplant-related expenses. A COTA fundraising specialist trained volunteers for the COTA for Team Teagan campaign and walked them through the entire COTA fundraising process. This group of family members and friends quickly got to work organizing fundraisers to help with transplant-related expenses. 

On May 29th, Teagan was officially listed on the UNOS (United Network for Organ Sharing) Active Liver Transplant List. Both Elizabeth and Zach took deep breaths and settled in for what they thought would be a lengthy wait for ‘the call’ telling them a perfect liver had been found for Teagan. However, that call came just a few weeks later on June 19th — a match had been found for Teagan. 

Elizabeth blogged on the COTA website on June 20th:  Our prayers have been answered in the most miraculous way! Teagan is on her way to receive her new liver. She goes into surgery late tonight and we need your prayers and good vibes. Please also pray for the family members of the donor who are facing unimaginable heartache while we are rejoicing

And on June 25th:  In the chaos, anxiety and excitement of the last few days we realize we had not posted an update here. Teagan’s surgery took place overnight on June 20th and into June 21st, which is her official transplant date. Fast forward 72 hours and our little warrior princess is really making a remarkable recovery. She even is back to enjoying a special delivery of her favorite ‘Donnie’s Donuts’ blueberry donut! 

On June 29th, Elizabeth blogged:  We are happy to report that just seven days post transplant, Teagan is recovering at home. Her medical team is amazed by her progress and her recovery. We could not have braved this storm without the love and prayers of family, friends and complete strangers who have lifted us in prayer. To those of you who have graciously donated to COTA for Team Tegan THANK YOU! COTA funds assist with transplant-related expenses associated with the liver transplant stay and post-transplant expenses, which will continue to escalate with twice-weekly return trips to the transplant center and other out-of-pocket costs

To their friends and family members amazement, the COTA for Team Teagan fundraiser scheduled on July 1st, which was a car show appropriately planned at Donnie’s Donuts, had a unexpected celebrity appearance when Miss Teagan showed up to ‘wow’ the COTA Miracle Makers who were in attendance. 

Teagan had a medical setback in late August that required a week-long PICU stay where she was able to receive necessary IV medications. But not even a hospital stay could keep Teagan down. She was home and able to celebrate her first birthday in a very big way in September. 

Elizabeth updated the Team Teagan Facebook page with many beautiful birthday photos and this update:  Here we are on a day we were not sure we would ever see … Teagan’s first birthday!!! Her ‘Brave Little ONE’ party was full of happiness and LOTS and LOTS and LOTS of frosting – and Donnie’s Donuts. 

“While every transplant story is definitely different, ours was unique because of Teagan’s compressed ‘transplant timeline.’ We learned about the Children’s Organ Transplant Association (COTA) at her first transplant team appointment, and she was listed for a new liver just six days later. Her life-saving transplant occurred three weeks after that, and we were all home one week after transplant. COTA has been an incredible safety net for us. We understand the reality of transplant including the appointments, medications and possible second transplant that could be part of her future. The peace of mind COTA provides is truly invaluable and lasts … for a lifetime,” said Elizabeth and Zach.
 

Today, Three-year-old Toddler Teagan is doing well. She has recently started gymnastics lessons and is still a big Disney World fan. She has regular doctors’ appointments and takes numerous medications to keep her new liver healthy. Her favorite thing to do is to play outside — all of the time. Her trusty stuffed friend ‘Lambo’ is typically in her hands or at least in her sightline. Lambo has been everywhere with Teagan since her diagnosis — including in the transplant operating room while she received her new liver. Elizabeth says Teagan’s post-transplant journey has been nothing but smiles and joyous celebrations. 

“While we have been lucky to have very few bumps in the road along Teagan’s journey we know anything is possible with a transplant. However, we remain hopeful that with Teagan’s positive attitude, goofiness and strength will carry her through life gracefully,” Elizabeth added. “That being said, the fact that COTA’s support and guidance lasts a lifetime has been an incredible safety net for us. COTA allows us to breathe easier because we are very aware that a successful transplant is not the end of the journey … it is really just the beginning.”

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