Board of Directors

Meet Necia Sabin, a compassionate advocate, and the driving force behind this empowering support group. Necia first encountered the term “Heterotaxy” when her daughter was six years old. Confronted with numerous surgeries and medical procedures, Necia navigated through these dark and challenging years, seeking connection and support. It was during these difficult years that she crossed paths with another heterotaxy mom, laying the foundation for what would become Heterotaxy Connection. Driven by a profound desire to spare others from the struggles that she experienced, Necia assumed a pivotal role in founding Heterotaxy Connection. She strives to provide immeasurable support for families with Heterotaxy. The heartfelt thanks from those who find comfort, belonging, and support in this community make the effort worthwhile. While Necia acknowledges that her personal journey has not been easy, she strives to make others’ journeys easier who face similar challenges.

Alison has been a pediatric RN for two decades and has experience with heterotaxy from both sides of the bed, first from caring for patients in the PICU and later as the mother of a child with Heterotaxy and complex congenital heart defects. Working overseas on board a charity hospital ship in West Africa gave her a deeper understanding of the needs of the underserved, and she translated this knowledge into a passion for healthcare advocacy in the US when her son's diagnosis necessitated a move to land. In addition to her role at Heterotaxy Connection, Alison currently works as a pediatric home health nurse, a need whose importance she came to understand on a personal level after getting involved in the Heterotaxy world and the wider disability community.

Monica has worn many hats—music teacher, performer, military spouse, trail race coordinator, and volunteer—but nothing prepared her quite like becoming a mom to a medically complex child. While living thousands of miles from home, she received her unborn daughter’s rare diagnosis of Heterotaxy. With little information from doctors beyond a two-page printout from Google and a scary prognosis, she turned to the newly formed Heterotaxy Connection. This group quickly became her lifeline, offering support and resources as she stepped into the role of primary caregiver. In those early years, Monica learned how to create routines, manage medical care, and navigate hospitals—often while moving from place to place with the military. She eventually went from receiving support to giving it, volunteering with the Heterotaxy Connection to help raise awareness and organize fundraisers. She also homeschooled her daughter for five years until she was stable enough to attend school, where she’s now thriving. These days, Monica homeschools her preschool-aged son while growing her business, Inspired By Lauren, named after her daughter. She loves making children’s clothing, crafting, gardening, and spending time in nature. Through it all, Monica has learned to embrace change, find joy in creativity, and support others navigating similar challenges.

Over eight years ago, Karli’s world turned upside down when she learned her son was diagnosed with Heterotaxy during pregnancy. The news was overwhelming, and the isolation she felt in those early days was immense. With such a rare condition and so few answers, she struggled to navigate an uncertain path, feeling lost in the face of so many unknowns. When her son was born, advocating for him became her lifeline—ensuring he received the best care possible through multiple surgeries and long hospital stays. In the midst of the chaos, Karli found Heterotaxy Connection, and it changed everything. The support she received not only provided a sense of community but also gave her the tools to ask the right questions and make informed decisions. The guidance she gained from the network became a cornerstone of her journey—both in securing the best care for her son and in finding strength for herself. Today, Karli is driven by a deep desire to give back to families who are walking the same difficult road she once did. She knows how powerful it is to feel heard, supported, and connected, and she’s dedicated to providing that same sense of hope and comfort to others. Karli’s mission is to ensure no family feels alone in their journey, offering the same life-changing resources and compassion that made all the difference in her own.

Rene Harrell is a proud mom of eight, including her youngest daughter Seraphina, who was born with holoprosencephaly and heterotaxy. Seraphina lived to be eight years old, and her journey strengthened Rene’s passion for equipping families facing medical complexity with the resources and practical support they need to navigate the challenges of caregiving, make informed decisions, and prioritize quality of life and family well-being. Before joining Heterotaxy Connection, Rene previously served as a President of Colorado Parents of Blind Children and as one of the co-founders of Mended Little Hearts-Colorado Springs. In both roles she was responsible for overseeing the creation and expansion of peer-to-peer mentorship, community outreach, and education initiatives for families, and she is excited to bring the same dedication to Heterotaxy Connection in its mission to support, educate, and empower all those living with Heterotaxy.

Nick spent his childhood in Gig Harbor, Washington, a picturesque small town nestled along the Puget Sound, where the waterfront and tight-knit community shaped his early years. The serene landscapes and slower pace of life instilled in him a deep appreciation for connection and resilience. Eventually, he left the Pacific Northwest and relocated to Utah, trading coastal views for desert mountains and embarking on a fresh chapter. During the COVID pandemic, he remarried and embraced as his own a child with Heterotaxy. Determined to understand Heterotaxy, Nick immersed himself in research and the experiences of others navigating this rare condition. What began as a personal journey quickly grew into a passion for supporting the Heterotaxy community. Since then, he has committed himself to raising awareness and offering support, inspired by the strength of those affected. Having lost a loved one to cancer, his perspective has been shaped by grief and the profound value of standing by others, fueling his dedication to this cause.