Preston's New Hope--help his life saving kidney transplant

Preston's New Hope

“I don’t want to die!”

One random day around two years ago, I was running errands with my mom, Dana, and Preston in the front seat of the car in our hometown. This was shortly after we found out Preston was going into renal failure and would need a kidney transplant. While we were listening to music and on our way to a grocery store, my mom and I were working to explain kidney transplant and his medical situation to Preston. As he was trying to make sense of it all in his brain, he said those words–“I don’t want to die!”–so sincerely that my mom and I couldn’t help but look at each other with tears in our eyes, knowing that with this admission, we had another long medical road ahead. But also knowing we are willing and ready since we have been through things like this before.

The above powerful, personal memory written by Preston’s older sister, Korrin, launched us into realizing that we need help in order to make it through this challenging time. We are asking with humble hearts for prayers, support, and donations as our family faces another overwhelming medical journey.

Preston, who is also a previous heart transplant recipient with a difficult course, is now preparing for a kidney transplant. He has been listed and waiting for a new kidney for more than 2 years.

The outstanding medical expenses in addition to years of travel, lodging, and associated costs have placed a significant financial strain on our family. Now, the looming expenses and knowing we get to stay out of state after the transplant causes great concern. We are required to stay

near the hospital for a significant amount of time while Preston recovers and is stable enough to return home. All of this places a burden on the family, let alone the financial pressures of maintaining two households. Any contribution—big or small—will bring us hope and help us navigate this difficult time.

Preston’s 19-year journey has been extraordinary from the very beginning. Diagnosed with a serious heart defect in utero and warned he may not survive if he was born at our local hospital, our family drove 500 miles to Denver, Colorado, to give birth and allow him his best chance at life. The incredible team at Children’s Hospital saved his life with a heart transplant at just two months old. His first year was full of challenges and complications. We used to say Preston had more medical procedures in the first year of his life than most people do in their lifetime, and at some points, they just kept coming. However, Preston’s resilience shone through. After a year, we were finally able to return home.

As Preston grew, he faced additional difficulties. He dealt with a rollercoaster of continued medical complications, including a number of emergent medical jet flights to Colorado plus too many road trips to count just to maintain his heart.

Diagnosed as primarily nonverbal with autism, he struggled for years to find people and a community that truly understood him and saw his potential like his family did. Time, faith, and significant effort helped us find the right therapists and schooling. Once we did, Preston began talking more and thriving. He now speaks in complete sentences—a milestone we cherish every day.

Preston’s life has been anything but typical. He must take anti-rejection meds on time every 12 hours. He gets regular labs to verify med levels and blood counts are good. He's had numerous medical challenges, scheduled procedures, and doctor visits. Even so, his life is filled with joy and passion. He has a deep love for books, Disney, Pixar, and most animated films, eagerly keeping up with new releases and dreaming of creating his own movies someday. He adores road trips, often keeping an eye out for billboards and signs he likes. He loves visiting zoos! Giraffes and other African animals are his favorites, along with bears, big cats, and sloths. He also has an eclectic taste in music. His “Preston’s Jams” playlist has 750 songs ranging from 1950s classics to country, modern hard rock, and more. Preston enjoys taking pictures and carefully organizing them into scrap book compilations. He reads his favorite things, completes math problems that give some people pause to calculate, remembers movie studios and dates like a search engine, helps navigate routes, and has a visual memory that amazes us every day.

Another dream of his is to go to Disney World and Universal after he is well-healed from his kidney transplant.

Our family has worked hard over the years of his life to economize, making life changes and sacrifices to prioritize Preston's health and well-being. Despite this, the challenges have often been taxing. When we learned Preston was on the road to kidney failure due to long-term use of anti-rejection meds and procedures, we were devastated. As part of Preston’s journey to manage his health while waiting for a kidney transplant, he has been on dialysis for the past 18 months, receiving peritoneal dialysis three times a day, carefully administered at home by his mother, Dana. Through it all, Preston continues to rise above each struggle with inspiring strength, legendary resilience, and great determination.

After Preston qualified for the kidney transplant program with the first hospital, he was then reviewed by another team making dire predictions and giving devastating news, citing labels we had never heard. He was subsequently turned down more than a year later by that same kidney transplant team and they gave him a designation of being “medically unsuitable.” Three other hospitals also said “no,” pointing to grim outcomes with a number of doctors giving more scary recommendations and negative comments. A fourth hospital gave encouragement, but did not fit Preston’s cardiac needs, so we deferred. Although frustrated, we were not willing to give up hope. Dana was pulled to contact Mayo Clinic in Minnesota.

Thankfully, after extensive evaluation, Mayo Clinic–located over 1,000 miles away–has given us renewed hope by accepting Preston into their program for kidney transplant and cardiac care. Mayo Clinic's doctors are willing to see his potential and would like to help him. The doctors’ attitudes are refreshing and hopeful.

Our family is incredibly grateful for the care and compassion Preston has received throughout his journey, and we are deeply thankful to Mayo Clinic for giving us this opportunity for his kidney transplant. The financial burden of medical expenses, travel, lodging, and the estimated two-month stay along with follow-up trips after his transplant overwhelms us.

We now turn to you–our community– for help. Your support, whether through donations, sharing this page, or sending prayers, means the world to us. While we try to stay afloat with the resources available to us, this new chapter has made it clear that we need to swallow our pride and ask for help. Setting up this GoFundMe has not been an easy decision, but it is a necessary step to ensure Preston continues to get the care he needs and our family gets some relief from overwhelming financial burdens.

Thank you for taking the time to read about our journey. We will continue to update stories and appreciate your support. With your kindness and generosity, we are hopeful that we can overcome this next chapter together.