Meet Mable
Mable is a fun, loving, and spunky four-year-old who loves dress-up, putting on performances, and dreams of working on an ambulance with her Mama. Born with a rare metabolic condition called Maple Syrup Urine Disease, she received a liver transplant on April 10, 2026. Her original liver was then transplanted into another child—making her both a transplant recipient and a living organ donor. As her transplant journey continues, she will have lifelong care and ongoing expenses. Please consider contributing to COTA in honor of Mable or sharing her story.
Mable’s Story
Our daughter, Mable, was born in March 2022 in Anchorage, Alaska. She came into this world like any other newborn and we were so excited to welcome her. Alaska was a place that we loved, but we had no idea of the challenges her healthcare needs would soon bring while living in such a remote location.
A few days after Mable’s birth, we received a call that her newborn screening had flagged for a rare genetic disorder called Maple Syrup Urine Disease (MSUD).
Maple Syrup Urine Disease is a very rare genetic disorder that affects about 1 in 185,000 infants worldwide. Living with MSUD means following a restricted-protein diet, drinking a prescribed amount of special formula every day, undergoing frequent laboratory testing to monitor amino acid levels, and often times requiring hospitalization during illness or when those amino acid levels fall outside of a safe range. If not carefully managed, metabolic crises can lead to neurological injury, a coma, and even death.
This diagnosis was overwhelming, scary, and one that no parent expects to hear. Fortunately, we were quickly connected with a metabolic medical team that was knowledgeable about MSUD and helped guide us in the right direction before Mable suffered any long-term neurological damage.
We also learned early on that liver transplantation was a medical treatment option for MSUD. A transplant could allow Mable to eat a much more normal diet, while dramatically reducing the risk of a metabolic crisis associated with the disease.
As her parents, we decided early that we would do whatever necessary to provide Mable with the most comprehensive and supportive care possible. Like most parents, we wanted to give her every opportunity to grow, thrive, and reach her full potential. We chose to become a single-income family so Mable’s Mom, Amber, could step away from her career as a Registered Nurse and focus her knowledge, time, and advocacy on managing Mable’s extensive medical needs.
The first few years of Mable’s life were a whirlwind. We never imagined we would live in three states in three years, spend extended periods of time living in our RV, or have numerous (I mean NUMEROUS) different medical providers while searching for the right care for our girl. We have had to make some significant life decisions and changes along the way, but we also never blinked an eye because these decisions were necessary in order to get Mable the safest and most comprehensive care available.
Mable is a full of life, funny, loving, energetic four-year-old. She loves dressing up and doing “performances” for anyone willing to watch. She’s strong-willed and spunky, clever and wise beyond her years, sweet and thoughtful. She leaves an impression on nearly everyone she meets.
Mable says when she grows up, she wants to “work on an ambulance with you, Mama. Just you and me.” A statement that would make any Mama’s heart melt.
Ben, Mable’s Dad, serves on active-duty in the U.S. Air Force and with the Air Force’s support we have finally settled (a term every military family uses loosely) at Hill Air Force Base near Salt Lake City, Utah. After moving here, we were able to quickly establish care with Mable’s medical team and got her placed on the liver transplant waitlist. We immediately felt confident that she was in the right place and in the best medical hands.
On April 10th, 2026 Mable received her liver transplant; a day we had been working toward for years. She has done well overall, but like most transplant recipients, there have been bumps and unexpected turns along the road to recovery. She continues to have frequent appointments, laboratory testing, radiology imaging, medication adjustments, and even several hospital readmissions.
We think the absolute world of Mable, but there is another part of her story that makes it even more incredible.
Because MSUD is a genetic disorder, Mable’s original liver was otherwise healthy and could function normally in someone who does not have MSUD. This means that her original liver was able to be transplanted into another child.
At just four years old, Mable became a LIVING ORGAN DONOR, while also receiving the transplant that changed her own life.
That is a title very few four-year-olds can say they hold. And while she does not yet understand how extraordinary this is, we hope someday she will understand the significance of what she was able to give to another child and their family. We are exceptionally proud of her for this!
Life has thrown us many curveballs, but it has also given us so many beautiful adventures along the way, including welcoming our second daughter, Emma. We have faced many challenges together and will continue doing whatever necessary to support Mable, Emma, and our family.
We have worked hard to absorb the costs associated with repeated moves, specialty care, travel, hospital visits, prescriptions, and the many other expenses that come with managing a lifelong medical condition and transplant. The Air Force and TRICARE have been tremendous resources for our family, but even with that support, the cumulative costs of Mable’s care and our relocations have placed increasing pressure on our single-income household.
This is why we have decided to partner with the Children’s Organ Transplant Association (COTA). COTA is helping us to create a way for family, friends, and others who are inspired by Mable’s story to rally around her along the transplant journey, both now and throughout her lifetime. 100% of the funds raised for COTA will help with transplant-related expenses such as hospital stays, medical appointments, medications, travel, and other qualifying costs associated with her care.
We do not take asking for support lightly; however, we know that this will be a lifelong journey for Mable and our family. The additional support from COTA would help offset some of the transplant-related expenses that have accumulated throughout Mable’s journey and allow us to continue focusing our resources where they matter most: giving her the care, stability, and opportunities she needs to thrive.
Our sweet girl has her whole life ahead of her and we know she will continue to make a positive impact on the people around her and the world.
Thank you for taking the time to read our family’s story. We are incredibly grateful to everyone who has encouraged Mable along the way and to anyone who chooses to be part of her journey moving forward.
Sincerely,
Mable, Emma, Amber, & Ben Wilsey
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.