At 15, Bella Arlt was suddenly diagnosed with liver failure. Just three weeks later, she received a life-saving transplant at Texas Children’s Hospital; a gift from a donor she will never meet but will honor forever. Grateful for her second chance, Bella has made it her mission to raise awareness about the power of organ donation and the hope it brings to families like hers. In 2025, she was named the American Liver Foundation’s Pediatric LIVEr Champion, a role that allows her to share her story, inspire others, and carry forward her donor’s legacy of generosity and love. She was also honored to be part of the panel at the Texas Children’s Liver Symposium, sharing her story alongside her doctors and parents. Bella is expanding her advocacy by joining SPLIT as a mentor, excited to guide and encourage other children facing challenges like hers.

Madelyn is a liver transplant recipient who was transplanted at Medstar Georgetown University Hospital and is a molecular biology and biotechnology student at George Mason University.

At the age of 12, Madelyn was diagnosed with Budd Chiari Syndrome and acute liver failure due to a complication from a rare chronic blood cancer. A transjugular intrahepatic portosystemic shunt (TIPS) was placed and her condition stabilized allowing her to temporarily come off the waiting list. After multiple complications her team made the decision to re-list her for transplant at the end of 2019. 288 days later, at the age of 17, she received the life-saving call that a liver was available.

Exactly one year after her transplant, Madelyn graduated high school and was looking for a way to bring organ donation awareness to her college campus. She was introduced to Student Organ Donation Advocates (SODA) on social media and knew she wanted to get involved. In January 2022, she and two friends founded SODA at GMU. Since then, the GMU chapter has won two awards, partnered and hosted multiple organizations to increase their impact, and have worked with their OPO, Infinite Legacy, to increase donor registration and public education for organ, eye, and tissue donation in their community.

Madelyn does advocacy work with other organizations. She serves on the American Transplant Society’s (AST) Transplant Community Advisory Council (TCAC) where she represents the adolescent and young adult voice. She also is currently working on the Partner AD3vance project that looks to emphasize the adolescent and young adult voice in patient centered outcomes research. She serves as one of the first cohort Transplant Advocacy Partner (TAP) members and has enjoyed supporting TAP’s mission and connecting with other transplant recipients her age. After working with TAP, she wanted to bring the Partner AD3vance project back to her transplant center. She worked with the Child Life team at her pediatric program to create curriculum for a peer mentorship group. She now holds weekly meetings for teenagers and young adults transplant patients that are preparing to transition to the adult program and provides peer guided education, support, and community. Madelyn collaborates with other non-profit organizations aimed at improving pediatric transplantation and organ donation awareness. She has spoken at medical schools and conferences sharing her story and experience with liver transplantation as well as the progress from some of her advocacy efforts. She enjoys connecting with the broader transplant community to improve the lives of donors, recipients, and all those impacted by organ donation and transplantation.

Being a cancer survivor Madelyn also works in pediatric oncology. She works with the Toretsky Laboratory researching Ewing Sarcoma (ES) and targeted small molecule inhibitors. She also works to create diagnosis and treatment guidelines for Myeloproliferative Neoplasm (MPN) in patients under the age of 25 with the European Hematology Association. MPN is the chronic blood cancer that originally led to Madelyn’s need for liver transplantation. She has also participated in multiple childhood cancer awareness efforts and has received grant funding from Alex’s Lemonade Stand Foundation and St. Baldricks Foundation for her research.

Madelyn is excited to join SPLIT and work with other patients and parents to improve pediatric liver transplantation. She wants to continue her efforts at her center but also expand support and resources, so they reach all families facing a liver transplant. She also hopes to complete her bachelor's degree and continue to work toward a career in medicine. She is inspired by her medical team and hopes to give back to the medical community that has helped support her. She looks to serve patients like herself and provide a unique perspective on patient care in and around transplantation.

Sophie Hansen, from Salt Lake City, Utah, has lived with a chronic liver disease – primary sclerosing cholangitis (PSC) – since the age of three. At 15-years-old, she received a split liver transplant on December 31, 2017 at Primary Children’s Hospital, after waiting on the transplant list for nearly five years. This transplant gave Sophie the chance to graduate from high school, start college, and get back to doing the things she loves, like hiking and travelling. In 2023, Sophie was diagnosed with recurrent PSC, and was placed back on the transplant list. She received a second liver transplant on February 13, 2024. Sophie’s personal experiences inspired her to pursue an education and career in medicine. She currently works as a researcher in hepatology and pediatric organ transplantation, and is in the process of applying to medical school. Sophie’s research interests include pediatric & rare liver diseases, equity in transplant, transplant center operations, and organ preservation techniques. Sophie is passionate about patient advocacy and in addition to PFEP, currently serves as a volunteer at the Global Liver Institute (GLI), American Association for the Study of Liver Diseases (AASLD), Fight For Life Club, and DonorConnect. She also acts as a peer mentor to transplanted teenagers who are transitioning from pediatric to adult care teams. Through her personal experience and background in medicine, Sophie hopes to bring a valuable and unique perspective to the liver community, as we work to improve the lives of those living with liver disease.

Neshea Harrison was born in San Diego, CA, and raised in Baton Rouge, Louisiana. She holds a Bachelors in Psychology and a Masters Degree in Organizational Leadership. She married her high school love Edward in 1995 and has 3 children. Edward is a Post Master of the USPS. Their two sons are in their 20s, and their daughter Blythe (b.2013), the old soul of their life, and their miracle. Blythe’s etiology for her diagnosis is unknown. Blythe was a liver transplant recipient at the age of 16 months at Rady Children’s Hospital in San Diego, CA from a deceased donor. Thanks to her gift of life, Blythe is the Youth Ambassador for the Liver Coalition and participates in youth groups at church. She is also a Girl Scout, plays volleyball and softball, archery, taekwondo, and loves basketball.

Being a part of SPLIT PFEP allows Neshea an opportunity to help those who are where she has been. She feels that this forum gives parents an opportunity to voice change where it matters most. She also feels that those who have experienced the obstacles are commonly the ones whom are more likely to make effect changes since they have lived through the situations.

Another fun fact about Neshea is that she has had the pleasure of caring for her 2 nieces, and is the caregiver to her uncle with a heart defibrillator. She has a seat on board for the Liver Coalition Committee, volunteers for Hospice, a member of Revelation L.A church and a member of Black Chaplains International Association. Neshea says, “I’m a warrior for Christ, a daughter, a sister, a wife, a mom, an aunt, a niece, a friend, I’m a breast cancer survivor, a Chaplain, spiritual advisor, a mentor,  a listener, an activist for people, and an individual who is determined to be there and do whatever is needed to help those in need. I love Jesus with ALL my soul because without HIM there would be no me, HE has been my foundation.”

Sarah Mandara lives in Honeoye Falls, New York, a suburb of Rochester, with her husband Dan, their two sons—Henry (4) and Lucas (17 months)—and their two golden retrievers. She is a certified K–12 school counselor with a master’s degree in Counselor Education and a bachelor’s degree in Social Work.

hroughout her career, Sarah has worked in Title I school districts, where she has been a tireless advocate for equitable access to mental and physical health resources for all students. In 2025, she returned to her hometown to join the Canandaigua City School District as a School Counselor for grades 2–3. The district has provided exceptional support for Sarah’s strong commitment to family wellness and her advocacy on behalf of liver transplant families.

In March 2024, Sarah’s youngest son, Lucas, was diagnosed with biliary atresia. At just five weeks old, he underwent the Kasai procedure. Following months of research, support from the Biliary Atresia Research and Education (BARE) organization, and connections with other liver families, Sarah and Dan made the critical decision to transfer Lucas’s care to NewYork-Presbyterian/Columbia University Medical Center’s Morgan Stanley Children’s Hospital to undergo evaluation and transplant.

On June 17, 2025, Sarah became a living donor for Lucas, donating a portion of her left lobe and giving him a second chance at life. This experience has further fueled her dedication to supporting children and families navigating complex medical journeys. It continues to shape her work as an educator, advocate, and mother.

Sarah was connected with SPLIT’s Patient and Family Engagement Program (PFEP) in late summer 2025 by a supportive bare member. She is passionate about raising awareness for children with biliary atresia and pediatric liver transplants, advocating for living donation, and promoting transparency and support for families and caregivers.

Kate Mullen currently resides in New Hampshire with her husband, son Finn (b. 2016), and dog Ned. Kate is a Licensed Independent Clinical Social Worker and Registered Drama Therapist. She holds a Bachelor of Science from New School University, and a Masters of Social Work from New York University. She began her clinical work in New York City, first working in outpatient adolescent mental health, and then in community mental health offering individual and group counseling to children, adolescents, adults and families. In addition to therapeutic work, Kate is the director of a theater arts program called Triple Threat Theater Camp. By utilizing her theater background, she brings Broadway veterans to New Hampshire to share their knowledge each summer with youth ages 6-17. She has been an active member in the organ transplant community and advocate for live donors since her son Finn’s dual diagnosis of Biliary Atresia and Alpha One Antitrypsin Deficiency shortly after his birth. After dual listing, Finn received a live donor non-related liver transplant at New York Presbyterian Columbia Medical Center Morgan Stanley Children’s Hospital in the Spring of 2017.

Kate was asked to join SPLIT PFEP in the Spring of 2020. She has had the opportunity to attend two in-person conferences and grow her connections with other transplant families.

Kate, Finn and his donor Sarah were invited to share their living donor story on news programs such as ABC World News and The Today Show. Kate has written about Finn’s journey and shared it publicly through a Facebook page which has led to many connections with other transplant families.  Kate serves as a board member for BARE - Biliary Atresia Research and Education. She has assisted with the family day with the BARE Symposium in both Chicago and Palo Alto.

Stephanie Mullett is a mom to two kids, Emma (b.2012), and Bryce (b.2018). She is the Program Administrator for the Alagille Syndrome Alliance. Her son Bryce had a liver transplant in August 2018 at Children's Hospital of Colorado, where her husband was Bryce's living donor. Bryce and Stephanie both have Alagille Syndrome, which led to the need for his liver transplant.

She joined SPLIT PFEP in 2023 to engage deeper in the transplant community, share resources, and continue to advocate for the needs of transplant recipients and their families.

Tricia Murphy is the mother of two beautiful children, Brock (b. 2018) and Emma (b. 2022). Their family lives in Hawaiʻi on the island of Kauaʻi. Tricia works for the Department of Human Services. Her husband, Brandon, retired from the US Air Force.

Her daughter Emma was diagnosed with biliary atresia at 90 days of life and underwent her Kasai portoenterostomy at the National Center for Child Health and Development (NCCHD) in Tokyo, Japan. Due to the complexity of organ transplant, Emma’s care was transferred to Cleveland Clinic Main Campus (CCF) when her Kasai was deemed unsuccessful. Emma received her gift of life from an anonymous living donor at eight months old. After 13 months at CCF, Emma was stable and her care was transferred back to NCCHD in Tokyo.

Emma’s current GI doctor is located at Kapi’olani Medical Center for Women and Children on O’ahu and Seattle Children’s Hospital has taken over as primary for Emma’s post-transplant life since Hawai’i does not currently have specialists for pediatric transplantation.

Tricia connected with SPLIT PFEP in 2025 through Seattle Children’s Hospital and is passionate about advocating for children with biliary atresia and liver transplants, family member support, and living organ donation. She is hopeful for the advancements in technologies and research that will help to facilitate a successful future for all transplant recipients, their families, and their donors.

Rylie Smith, 19 years old, youngest of 4 siblings, uncle to 3 nephews and 2 nieces. He is currently working as a Handyman learning all the skilled trades he can. Rylie’s transplant was at SickKids in Toronto, Ontario, on July 4th, 2007 when he was 10 months old, and his mom Vanessa was his living donor. Rylie's diagnosis was Pediatric Acute Liver Failure (PALF). He had early stage PTLD at 18 months old, but otherwise has enjoyed quite a healthy post-transplant life. He loves all things outdoors, anything motorized and has played elite soccer for over 10 years.

Rylie joined SPLIT PFEP in 2025 to be a part of a Peer to Peer Mentorship Program. He offers his pediatric patient perspective and enjoys learning about medical advancements and research in the global transplant community.

From a young age, Rylie, alongside his mom Vanessa, have been involved in numerous organ donation and transplantation awareness events and fundraisers. They were speakers for the Highschool Outreach Initiative (HSOI) presentations to grade 11/12 science students in Toronto/GTA about becoming organ donors, members of the Canadian Transplant Association (CTA), participants in the Canadian Transplant Games 2018 and the Winter World Transplant Games 2020. They are also volunteers with Simcoe/Muskoka Gift of Life Association and CTA Ontario Division. Rylie received the Youth Volunteer Award from the CTA Ontario Division in 2019. Rylie joined the PFV of the Starzl Network for Excellence in Pediatric Transplantation as a Patient Voice in 2024.

Vanessa Smith, happily married with 4 kids and 4 grandchildren, is a Client Service Advisor in the health benefits and life insurance industry, co-owner of JVS Landscaping and Contracting, as well as a living liver donor. She has worked in Accounting and Project Management in various industries such as clothing manufacturing, banking, hospital and college foundations, construction and aerospace. She donated to her son Rylie (b.2006), at SickKids in Toronto, Ontario, on July 4th, 2007 when he was 10 months old. Rylie's diagnosis was Pediatric Acute Liver Failure (PALF).

Vanessa joined SPLIT PFEP in 2017 to be a part of a Mentorship Program and ensuring that pediatric liver transplants recipients and their families always have a voice. She also enjoys learning about medical advancements and research in the global transplant community.

From a young age, Rylie, along with Vanessa, have been involved in numerous organ donation and transplantation awareness events and fundraisers. They were speakers for the Highschool Outreach Initiative (HSOI) presentations to grade 11/12 science students in Toronto/GTA about becoming organ donors, members of the Canadian Transplant Association (CTA), participants in the Canadian Transplant Games 2018 and the Winter World Transplant Games 2020. They are also volunteers with Simcoe/Muskoka Gift of Life Association and CTA Ontario Division. Vanessa has been a Family Voice, with the Starzl Network For Excellence since 2022, where Rylie has also joined as a Patient Voice.

Karen Toczek lives in Western New York with her husband, Ron, and their 8 children. By training she’s a registered nurse, but left the workforce in 2019 when she and Ron became certified foster parents. In August of 2019, the Toczeks welcomed their first placement, a six month old with ischemic choliangopathy and bile duct stenosis. Ezra’s diagnosis was a result of complications of meconium aspiration at birth that required ECMO treatment. He was referred to Morgan Stanley Children’s Hospital where he came under the care of Dr Vittorio, and had a Roux-en-Y performed by Dr Griesemer. Through foster care, Ezra’s adoption was finalized in the summer of 2022. As time passed, he began to show signs of liver failure, and it became evident that it was time to consider transplantation. The Toczeks followed Ezra’s team to NYU Langone and he was listed for liver transplant in February 2024. Through NYU’s living donor program, Ezra received his transplant from his former preschool teacher in August 2024.

Karen joined PFEP in 2025 and is excited to support and advocate for families and caregivers going through the process, and looks forward sharing her family’s experience with others.

Clair Verstegen, with her 3 children and husband live in Greenville, Wisconsin. She works as an operating room circulating Registered Nurse at a local hospital. Brielle (b.2015) was born with biliary atresia and was transplanted with a portion of her mom’s liver on April 20th, 2016 at 11 months old, at Children’s Wisconsin in Milwaukee. 

Clair joined SPLIT PFEP in 2024 to help lead the mentorship program at Children’s Wisconsin. She is looking forward to helping support new transplant families on similar journeys with their children.

Katy ter Weele, married in 2006, and mom to one son and two daughters. She is a nurse by training but currently works part-time as a Math Tutor and Substitute Teacher in a local elementary school. Her son received his liver at Johns Hopkins Hospital In Baltimore, from a deceased donor angel on January 16th, 2021. His diagnosis was Primary Sclerosing Cholangitis (PSC).

At the recommendation of Dr. Mogul, Katy joined SPLIT PFEP in 2021, to be a part of research and awareness efforts in the area of pediatric liver transplantation.

Katy advocates for the importance of exercise in physical and mental health recovery post-transplant. She has met with her State Senator to ensure the pediatric voice was valued while making changes to the organ transplantation system. She has also been a guest teacher in her area’s high school Biomedical Program to present on pediatric transplantation and organ donation. She and her family are involved with local efforts to spread awareness about the need for organ donation and they do an annual fundraiser to donate to pediatric liver disease research.

Brandi Yoko is an aspiring graphic designer and a mother of two children, the youngest of which, Teddy, was born with Biliary Atresia. While lucky that his bilirubin issues were noticed immediately, his Kasai procedure failed early, though lasted long enough for him to be able to get a live donor transplant at just under 9 months old at UVA in coordination with the pediatric liver transplant surgeons from UPMC. At the time, Brandi had just started volunteering for the Unbiased Science Podcast team to help design some of their social media posts and created a post on Biliary Atresia in October 2022, which also introduced her to the Biliary Atresia Research & Education Organization (BARE). Brandi has since tried to be an advocate for organ donation, early detection of Biliary Atresia and other pediatric liver diseases, and overall public health initiatives. Before its dissolution, Brandi had spoken in support of adding BA to the federal newborn screening program on behalf of BARE. She has also helped create some frames and graphics for BARE members to use for events such as National Liver Month and Organ Donation Month and has been on BARE's podcast, BARE It All: Coffee Talk. She has also joined the advocacy team for the American Liver Foundation. Brandi has worked at a theme park, Verizon Media in-house print shop, and is currently working for the corporate HQ for a national bath and kitchen showroom. Brandi lives in Virginia with her fiance, children, and their black lab/border collie mix, Fionn.