Our names are Beth and Heather, and we’re reaching out on behalf of a very special little girl named Remie and her incredible mom, Megan Stuchlik. Remie is a beautiful, brave 7-year-old who was born without her left arm—and that was just the beginning. Megan had a healthy pregnancy with no red flags, and every ultrasound showed what appeared to be a perfectly healthy baby. Nothing prepared her for the shock at birth, when it became immediately clear that something was very wrong. Remie’s missing arm was the first sign—but it was only the start of a long, complex medical journey. Over the past seven years, rare and complicated diagnoses have continued to stack up: GI dysmotility, scoliosis, airway defects, subglottic stenosis, a tethered spinal cord, a solitary kidney with kidney disease, immune system issues, and more. Her organs are smaller than normal, and many are not in the correct location, making her already rare medical picture even more complex. Remie doesn’t sweat, suffers from frequent migraines, and struggles with low energy and poor growth. She is one of the most medically complex children doctors have ever seen. In her short life, Remie has seen over 100 doctors across 6 different states, all in the pursuit of answers, relief, and a better quality of life. Despite the miles and appointments, many of her conditions still have no clear treatments. Daily life is hard for Remie in ways that most people can’t see. She struggles to eat and stay nourished because of her small stomach and severe GI dysmotility. Running and playing like other kids often leads to pain and exhaustion—her legs fatigue quickly, and her body just can’t keep up. The simplest childhood joys are often interrupted by medical limits. At just 16 months old, Remie underwent her first spinal surgery so she could walk. Now, she faces a second, highly specialized scoliosis surgery in the near future—one that only a few surgeons in the country are trained to perform. She is currently enrolled in three genetic research studies across the U.S., and her DNA has been added to a global database. So far, there are no matches anywhere in the world. Remie has a rare mutation in the TBX5 gene, which typically affects the heart. Thankfully, Remie’s heart has been spared so far—but doctors follow her closely with cardiology because no one knows what the future may bring. In addition, she has two other gene variations that have never been seen in a human before. Science is still trying to understand her. One of the hardest parts of this journey is that Remie is often overlooked—because she’s always smiling.She may look fine on the outside, but inside, she’s battling more than anyone can see. Her conditions silently affect every part of her body. Despite it all, Remie lights up every room she enters. She loves making TikToks, dancing, singing, and making people laugh. But right now, she needs advanced medical care that Nebraska simply can’t provide. She’ll be traveling to Children’s Hospital of Philadelphia for autonomic nervous system testing and a scoliosis surgery evaluation (VBT)—both of which are not available in our state. The family has been asked to put down multiple deposits per provider just to be seen in Philadelphia. These out-of-pocket costs, combined with travel and missed work, are creating a significant financial strain. Remie has three siblings who love her deeply, and this journey impacts their entire family—emotionally, physically, and financially. We’re asking for your support—whether that’s through a donation, a share, or a prayer. Every bit helps a little girl whose life is as rare as her DNA. As Megan often says: “If I don’t fight for her, no one else will.” That’s why we’re here—fighting alongside her and asking for your help. From the bottom of our hearts, thank you for supporting this amazing family. With gratitude, Beth & Heather #RemieStrong #HelpRemieHeal #RareDiseaseAwareness #GeneticMystery #MedicalFundraiser #FamilyOfWarriors