Featured Families
Meet the Arce family: Chris, Nicole, and Camden. Camden was born on April 7, 2023. Camden spent the first month of his life in the NICU due to struggles with thermoregulation and feeding. He graduated from the NICU in May, but the journey was only beginning. Due to continuing development struggles, Camden was referred for genetic testing at 3 months old. On his 5th month birthday, the family received the news of his SPTAN1 diagnosis. At first the diagnosis was devastating. Unfortunately, Camden's mutation is one of the most severe. As time has passed since the diagnosis, the Arce family has learned that even with immense grief, their is still opportunity for joy. Camden's SPTAN1 diagnosis is only part of his story. Anyone who has had the pleasure of meeting him knows him as the spiciest little red head with a famous side-eye. He loves to be included and involved in what's going on in the world around him. Chris and Nicole set a goal early after Camden's diagnosis to give him a life rich of love and experiences. As a family, they love to go on adventures. The beach and Mammoth are some of their favorite places to visit. Nicole was previously an elementary school teacher. She enjoys finding ways to adapt the world to make it more accessible for Camden. Chris is the adventure planner and is always looking for new places to experience as a family. If you would like to support the Arce family on their journey, you can visit their Camden Strong Bonfire page.
Meet the McFaddens: Riley, Kayla, Riley Jr., and the newest light of their lives, Elise. Born on October 27, 2023, Elise entered the world wide-eyed and curious, taking everything in. Shortly after birth, she was transferred to the NICU due to concerns about seizures and clonus. Two weeks later, she was discharged home, but her journey was only beginning. Feeding challenges and missed milestones soon followed. At just three months old, genetic testing revealed an SPTAN1 mutation. Elise’s deletion is considered on the severe end of the spectrum—a diagnosis that was incredibly hard to come to terms with. There is deep grief in knowing the “typical” life Elise won’t experience, but also profound gratitude for the life she is living: one filled with health, happiness, and the unwavering love of her village. Elise has a gift for stealing hearts. Her beautiful brown eyes framed by the longest lashes will melt you instantly. Her giggles and smiles regularly bring her family to tears. She delights in every sound—her brother’s playful screeches, Benson Boone’s songs, and even her mom’s “less-than-perfect” singing. She’s always perfectly polished with her nails and hair done, because Elise is, of course, a little lady. Full of surprises, Elise keeps her family on their toes every day, reminding them of the beauty in small moments and the strength that comes from love.
Meet Sebastian 🤍 The heart of his home, and the beloved son of Mayco and Rubi. Sebastian’s journey began before he was born. Early in Rubi’s pregnancy, she sensed something was wrong. It was a difficult pregnancy—the beginning of a path she never could have imagined. And yet, three years later, they find themselves living in the quiet, hard-won beauty of a life once feared as tragedy. Sebastian was born on February 22, 2023. During his first week of life, everything appeared normal. But by two weeks, he began to struggle—what would later be understood as failure to thrive. By three weeks, it was clear something wasn’t right. He couldn’t eat, wouldn’t sleep, and cried constantly. Despite every effort, nothing was enough. That’s when the search for answers truly began. On August 20th, the call came—one Rubi remembers with painful clarity. “SPTAN1. Terminal. Gene mutation. Life expectancy. No cure. Rare.” At the time, Sebastian was one of only seven known cases. But his parents didn’t grieve him—they loved him. Fiercely. Fully. They poured themselves into his life: researching, scheduling appointments, pursuing therapies, and advocating endlessly. Their goal has always been simple and profound—to give Sebastian a life filled with comfort, curiosity, exploration, and joy, embracing him exactly as he is. Sebastian has his own way of communicating. Not everyone understands it, but his family learns him more each day, catching glimpses of who he is within a body that challenges him through constant seizures, hypertonia, impaired hearing, and vision loss. To some, Sebastian may seem different. To his parents, he is simply their son—their three-year-old who loves being carried and cuddled by his daddy. His TV favorites include The Wiggles, Bluey, and Sesame Street (with Elmo holding a special place in his heart). He is deeply loved by his entire family—especially his cousins and aunts—and finds comfort in listening to his grandparents talk. Summer is his favorite season, particularly afternoons spent in the pool with his cousin, where his joy shines brightest. He is a Sunday-morning, worship-loving little one. Sebastian is not defined by a diagnosis. He is defined by love.