COTA for Caitlynn

Our Story

Our story of Caitlynn begins with her medical journey where she beat the odds. It also includes with her hospital visits. Caitlynn was given a second chance with a liver transplant. Thank you, COTA, for all that you do.

Caitlynn’s journey seemed to start in September of 2018. One day, we noticed she was walking/running a little funny and complaining about lower back aches. She made many visits to pediatric orthopedists and received no definite answers. We were finally referred to a neurologist where she was given an MRI at Brenner Children’s Hospital. The neurologist was still thinking this had to be a bone or muscle issue. However, the MRI revealed a buildup of metals in her brain. More tests were run showing that her liver and spleen were twice their normal size. This journey is getting more interesting by the week.

Our Story’s Plot Thickens

Our journey took an unexpected twist with a phone call that prompted us to pack our bags. Caitlynn was on her way to Brenner’s Children’s Hospital in Winston-Salem, North Carolina. This marked the onset of a significant change in our lives.

Our trip involved a four-day hospital stay with zero sleep and countless tests. At last, the results were found. Caitlynn had Autoimmune hepatitis, a condition with no known cure. Our only hope was for remission. Otherwise, she would need a liver transplant. 

Since then, Caitlynn had been on a daily regimen of steroids and other medications including CellCept. This combination was to combat and hopefully suppress the immune system and trick it into remission. Unfortunately, long-term use of medications such as these leads to other medical issues.  

Our Story Turns Critical

Recently, Caitlynn struggled with end-stage liver disease with stage 4 fibrosis in her liver. This was a critical condition. The doctors were surprised at the amount of damage to her liver. They continued other testing to ensure they were not overlooking other factors. A few Liver biopsies and an additional MRI ruled out other factors like Primary Sclerosing Cholangitis, however, her liver remained severely damaged.  

Since December 18, 2018, Caitlynn has undergone an endoscopy every six months. Occasionally, she has received variceal banding to treat the swelling in her esophageal veins due to compromised blood flow through her liver. Essentially, the doctors performed procedures to seal off veins in her esophagus to avert critical complications like a ruptured vein. The experience was frightening, yet her medical team was thorough and attentive in her treatment and care.  

Our story continues on 10th, 2024, when Caitlynn was put on the list for a Liver Transplant. She was happy at the thought of getting a liver transplant. Caitlynn had already been assessed and was ready for the challenge.

The Time Has Come

On June 5th, 2024, we received a call that brought excitement to all. It was time for the transplant. Her medical journey truly begins. Caitlynn entered the operating room around 9 PM on June 6th and was out by 5AM the following day. We had surgeons here from UPMC and Atruim. We had the best pediatric Liver Surgeons in the country here for Caitlynn. Caitlynn was a trooper throughout the whole ordeal. Progress was great. So far, the liver is functioning as expected. She has a long road to recovery but is still up to the challenge.

What Is Normal?

Throughout this medical journey, Caitlynn’s family has tried hard to keep her life as “normal” as possible. Our definition of normal may vary from most people. It may often include a few more doctor visits than most. Caitlynn has always been our creative spirit. She is often spending hours painting, doing do-it-yourself projects, and turning everyday objects into masterpieces. She rallies the girls in her Bible study classes and lives life as if “medical issues” were just two words in a dictionary. 

In many ways, Caitlynn is a typical 12-year-old, always managing to annoy (with love) her older sister. The sister code is strong, though, and it’s clear they’re each other’s biggest fans. Don’t forget Caitlynn’s 3-year-old sister who always keeps her on her toes. This ensures that our home is filled with hours of laughter and the occasional mess. 

We’ve had some wonderful moments over the years. A special memory is when Caitlynn was granted a “Wish” by the Make-A-Wish program. On October 5th, 2019, Caitlynn and her family spent a magical week at Give Kids the World and Disney World. It was a week filled with joy, smiles, laughs, and enough memories to last a lifetime—or at least until the next magical adventure! 

Reflection

Her journey has taken us to Brenner Children’s Hospital, Duke Children’s Hospital, and most recently, Levine Children’s Hospital. As parents, we all strive to provide the best treatment possible for our children, and we have been truly blessed to receive some of the best care available. We are especially grateful for the recent partnership between Levine Children’s Hospital and UPMC (University of Pittsburgh Medical Center), home to the leading pediatric liver transplant team in the country. This partnership, a pediatric surgeon from the UPMC team was involved in Caitlynn’s transplant, ensuring she received the best possible care. Our story is constantly changing as you will in the blog section of this site.

Thank You COTA

To better support Caitlynn, we have recently partnered with COTA to help with Caitlynn’s journey.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.  

With the help of COTA and other volunteers, any funds raised for COTA for Caitlynn will be used to assist with transplant-related expenses, such as medical bills, medications, and other medical-related expenses. COTA funds raised will be available for Caitlynn for the rest of her life. 

We are incredibly grateful for any help. Caitlynn is a fighter, bravely facing this ordeal as if it were not happening to her. Your support of COTA for Caitlynn means the world to her and helps ease the financial burden as she continues to navigate her medical journey. They have helped make our story available to you.

For more of our story, visit the BLOG and PHOTO pages.

https://cota.org/cotaforcaitlynn/photos/sample-gallery/