September 3, 2024 — The Children’s Organ Transplant Association is a national nonprofit with a powerful tagline … The Trusted Leader Supporting Families … For a Lifetime. Founded in 1986, COTA will soon be celebrating four decades of standing by this promise. A Colorado family’s transplant journey, which has a significant September milestone, is a living testament to COTA’s lifetime commitment.
COTA Teen Gavin Maxwell Liver Transplant Recipient
Gavin Maxwell was born in November 2004 in Wyoming. His birth was normal as was his first year of life. He had two sisters at home who were delighted with their new brother. In November 2005 when Gavin was taken to his one-year checkup, Mom Shay and Dad Willy assumed everything would be routine – just like it had been with their daughters. During the appointment, the pediatrician would press on the baby’s stomach, then move to something else … and then would return to the stomach area again.
It seemed to Shay their baby boy was undergoing a lot of pressing and poking. After repeating this part of the exam several times, the doctor suggested she might want to sit down. He explained that Gavin’s liver and spleen were enlarged and blood tests were needed. Those tests were done quickly and revealed the baby’s liver numbers were very high. Shay and Willy nervously waited for their next appointment when they would need to return for further blood work. At that visit, when the family was looking forward to Gavin’s first Christmas, they learned he was quite ill. Shay and Willy were given the choice of going to Denver or Salt Lake City for more tests.
In January 2006, they travelled to Colorado Children’s Hospital in Denver where Gavin underwent a myriad of blood tests, ultrasounds and other exams to try and determine what was causing his elevated labs and enlarged liver and spleen. After a few days of tests and the elimination of several possibilities, the doctors diagnosed the baby with a genetic disorder called Alpha-1 Antitrypsin Deficiency — a disorder of the Alpha-1 protein produced by the liver to protect the lungs.
In Gavin’s case, the proteins were malformed and unable to leave the liver, so they had built up over time and started attacking the healthy tissue of the liver causing cirrhosis. Willy and Shay were told the only ‘cure’ for Alpha-1 was a liver transplant. After receiving this unexpected news, they were discharged and sent home. They remember their heads were swirling; they were understandably devastated by the diagnosis.
Not only was Gavin facing liver failure and a transplant, but this was a hereditary disorder, so they were unsure who else in the family was at risk. Like other families who receive such a life-altering diagnosis, the Maxwells began a journey of learning as much as possible about the disorder, including finding the best medical team and hospital for Gavin.
Part of the family’s research led them to online communities of other liver kids’ families who were amazingly helpful in sharing their knowledge via websites and emails. One resource recommended to them from these online communities was the Children’s Organ Transplant Association (COTA), which looking back now … 18 years from the time of their first call … they describe as an incredible blessing.
Willy said, “We called COTA in February 2006 and they helped us from day one in terms of fundraising guidance and support. We also began researching the best hospital for Gavin’s care. We traveled the country, literally, and were not feeling comfortable until we landed in St. Louis, Missouri. From the moment we arrived at St. Louis Children’s Hospital, we felt a sense of peace and confidence. We began a journey and partnership that, along with COTA, has lasted more than 18 years and continues to this day.”
Liver transplantation, Alpha-1 disease management and COTA’s tools have evolved since June 2006, when the family’s initial team of volunteers was trained in Riverton, Wyoming. Now that Gavin has completed high school and has started college, Willy has written a narrative about how the family arrived at where it is today. Here are some of his reflections:
Throughout 2007 and 2008, we made multiple trips back and forth from Wyoming to St. Louis, sometimes every three months, working with the team to get Gavin’s lab numbers lowered and regulated through a variety of medicines. This was a costly endeavor and we were blessed by our families and community rallying around Gavin and wanting to provide support. COTA was so helpful in guiding our volunteer team in how to raise funds for transplant-related expenses and in working with us regarding how to receive allocations for medical bills, prescription medications, travel, lodging and so much more.
Life centered around Gavin’s health, whether it was making decisions on what schools to attend, where to go on vacation, what jobs Shay or I would take … everything revolved around the impact on Gavin’s health, proximity to doctors, and ability to travel to St. Louis at a moment’s notice. Gavin was able to attend preschool and elementary school, and from ages 4 – 9 his health was fairly stable. In 2013, after a season that took us from Wyoming to Montana to Tennessee, we returned to Wyoming. With each move, we would have to quickly establish a local physician who would take Gavin on as a patient.
One of the many benefits of working with COTA is that no matter where we were living, how many times we moved, they were a constant support. It did not matter if we were in transition as a family, COTA was an established partner in the journey … which has been an incredible relief and has helped us build a strong foundation for his care. We strived to make Gavin’s early childhood ‘typical.’ Allowing him to participate in activities and sports when possible. He played t-ball and soccer at an early age, and enjoyed hanging out with friends. His energy level never matched that of his peers, and his delayed physical development became more and more obvious as he aged. But it never deterred his desire to be involved, which we always encouraged. No matter the fear or anxiety Shay and I felt, we were determined to let him be a kid.
When Gavin was first diagnosed and we knew a transplant was inevitable, we were told there were a few things that could cause his liver to fail. One of those would be hitting an adolescent growth spurt. In November 2014, around his 10th birthday, Gavin’s health began to decline. His labs worsened, his energy levels fell and he began regularly missing school and activities.
In January 2015, he was diagnosed with Pulmonary Hepatic Syndrome, which caused his oxygen levels to drop to dangerous levels. St. Louis Children’s Hospital sent its medical flight to Wyoming and flew him to the hospital on January 25, 2015. The diagnosis was confirmed and the team quickly began to evaluate him to be placed on the transplant list.
Gavin was inpatient for almost a week undergoing a multitude of tests, while Shay and I had many meetings about the financial aspects of a transplant. Through these meetings, it was reassuring to know we had COTA on our side and in our court. We returned to Wyoming with Gavin on oxygen full-time, and he was officially listed for a new liver on February 6, 2015.
Then on February 27th, Shay, Gavin and I had to travel to St. Louis via airplane. His oxygen levels were quite bad. Thankfully, the wait was not long. On March 1st while sitting at Buffalo Wild Wings, we received the call that a liver was available. Within a couple of hours, we were checked in at the hospital. Gavin received his gift of life on March 2, 2015, and everything went amazingly well.
Because we lived in Wyoming and the transplant was performed in St. Louis, one of our greatest challenges was distance. After Gavin’s transplant, the team was willing to discharge us from the hospital but they were not comfortable letting us return home. We were able to connect with Mid-America Transplant who had housing for transplant families that provided a small, furnished apartment for us to rent. The cost of maintaining our home in Wyoming and an additional residence in St. Louis was challenging, but not a burden because of COTA and the outpouring of support from our family and friends.
Gavin was allowed to return to Wyoming on April 3rd and he was able to get back to a normal life. He went back to school, played with friends, joined sports and simply enjoyed being a kid. From the age of 10 to the age of 17, Gavin was able to just be Gavin. Our family moved from Wyoming to Greeley, Colorado, in 2018 where Gavin continued with school, including sports and activities, as well as part-time jobs. We were required to get labs done every three months and had to return to St. Louis for an annual visit. We were all enjoying settling in to our new normal.
Gavin maintained his close friendships from our days in Sheridan, Wyoming, and in summer 2022 he traveled from Colorado to Sheridan to visit his best friend. On June 30, 2022, Gavin sent Shay a text with a picture of his eyes, asking, “Do my eyes look yellow?” From what we could see they did. The parents of the friend he was staying with were both physicians, and they confirmed his eyes were yellow.
They took Gavin to the local hospital for lab work. Once the results were shared with St. Louis Children’s, they wanted Gavin inpatient in Colorado the next day. He caught an early morning flight. We picked him up and took him straight to Colorado Children’s where he was admitted for testing. His bilirubin was extremely elevated, along with other labs. This was so sudden, unlike the journey to his first transplant, and we were not prepared.
Although the hospital in Colorado was closer to where we lived, it still required one of us to take off of work and be at the hospital and the other to travel back and forth daily. COTA once again became an integral part of our lives because funds are available for a lifetime of transplant-related expenses. Once again, COTA funds could be allocated for travel, housing, food and medical costs … which would have been a huge stressor for us without that support.
Gavin remained inpatient in Colorado for two weeks. Despite all the efforts and great medical care, his liver did not respond. On July 12, 2022, Gavin was transferred by jet to St. Louis so his liver team could determine next steps. He was immediately admitted to St. Louis Children’s Hospital and underwent more tests and treatments. Over the next couple of weeks, the team tried to get his liver to respond positively, but ultimately nothing was successful. After a total of 24 days, Gavin was discharged from St. Louis Children’s, but we were required to remain close to the hospital until next steps were determined.
Again, we rented a small apartment. On July 30th, it was decided his liver was not going to recover. Gavin needed to be listed for another transplant. Once the evaluation process was complete and the team was comfortable Gavin was stable, they allowed us to return to Colorado. Over the next couple of weeks, while back at home, Gavin’s overall health continued to decline. Plans were being made for us to return to St. Louis to stay close until he received a transplant.
On September 14th, just days before we were scheduled to return to St. Louis, we received ‘the call’ that a liver was available for Gavin. We quickly packed the car and made the 12-hour drive, arriving at the hospital at 3 am on September 15th. Gavin was transplanted that day and we once again began the journey of recovery. On October 28th, the team gave Gavin the green light to return to Colorado and we quickly loaded the car to make the 12-hour journey home.
Since then, Gavin has been doing great in his recovery. He was able to complete his high school graduation requirements online (officially graduated in May 2023), and is working full-time. It sometimes seems like a dream.
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; therefore, COTA’s model shifts the responsibility for fundraising to a team of trained volunteers. COTA is a 501(c)3 charity so all contributions are tax deductible to the fullest extent of the law, and funds are available for a lifetime of transplant-related expenses.
Willy and Shay continue to be grateful that many years ago, COTA walked their volunteer team through every step of fundraising, provided great ideas for events and supported them with anything they needed as they were planning events and raising awareness about the family’s transplant journey. Nearly 20 years later, those volunteers’ efforts to raise more than $90,000 for COTA are still making a life-saving difference.
Gavin has basically grown up as a COTA Kid, to a COTA Teen and now soon, a COTA Adult. Gavin loves video games, sports, cars and playing with his little brother. He is thrilled to be done with high school and cannot wait to watch the next chapter of his journey unfold.
This September, the Maxwell family will be celebrating the second anniversary of Gavin’s second liver transplant. Gavin is attending Aims Community College in Greeley, Colorado, where he is studying criminal justice. He is also working as a security guard at the Northern Colorado Medical Center to further his career goal to become a police officer. His parents are relieved to know as he steps into adulthood and pursues his dreams, Gavin will be able to afford whatever care is required to keep his liver healthy — all thanks to an amazing team of volunteers, a supportive family and an assist from COTA.
Thank you,
Glenda, Charlie and David Cates
