At age 20, Omaha’s Alex Simpson celebrates a milestone doctors never expected — surviving a condition few live past infancy, thanks to love, faith, and dedicated care.
From the moment Alex Simpson entered the world in Omaha, Nebraska, doctors delivered the kind of prognosis no parent wants to hear. Born with an extreme form of a neurologic disorder known as Hydranencephaly, in which much of the brain’s hemispheres are absent and replaced by fluid, Alex’s medical team advised her parents, Shawn Simpson and Lorena Simpson, that their daughter would likely not live past the age of four. Yet on November 4, 2025, the family celebrated Alex’s 20th birthday — two decades of life, love, and care that many assumed would never arrive. Their daughter, who has only “about half the size of my pinky finger” worth of cerebellum remaining, according to Shawn, is not only alive but is a testament to resilience in the face of seemingly insurmountable odds.
While clinical definitions focus on what Alex cannot do — she is unable to see or hear and lacks the large brain structures associated with cognitive and sensory processing — her story refuses to be confined to those limitations. Instead, her family insists she senses their presence and emotions in a way that defies conventional understanding of consciousness and awareness. Shawn recalls watching his daughter look for him when he walked into her room, even though she cannot see in the typical way. “You can see … she was looking for me,” he told local media.
Brother SJ, now 14, said that Alex seems to notice when someone around her is in distress or experiencing pain—even when it is entirely silent in the room. “Say somebody’s stressed around her — nothing will even happen — it could be completely silent, but Alex will know. She’ll feel something,” he said.
Medically speaking, hydranencephaly is extremely rare — estimated to occur in roughly 1 in 5,000 to 10,000 pregnancies — and the condition typically results in death within the first year of life under current clinical data. The fact that Alex has lived 20 years is remarkable by any measure, and for her family, it has become nothing short of a miracle built on unwavering love, faith, and constant, specialized care.
In the earliest days of Alex’s life, there was still hope. But that hope came against the backdrop of grim odds. Shawn recalled the fear and uncertainty when they first learned of his daughter’s diagnosis: “Twenty years ago we were scared but faith, I think, is really what kept us alive,” he said. For Lorena, each day was a step into unknown territory: every feeding, every infection, every moment of care carried the weight of fragile hope. Her mantra became endurance.
As Alex moved into infancy, childhood, and adolescence, the standard medical expectation was not survival, but palliation. Instead, the Simpson family set up a life of daily devotion: ventilator support, feeding tubes, constant monitoring, physical therapy, emotional connection, and the decision to integrate Alex fully into the family rhythm rather than hide her away. They adapted. They persevered. They loved.
Love, they say, has been just as crucial to Alex’s survival as any medical intervention. When asked why she continues to live far beyond what was predicted, the answer given by her parents is simple: “love.” It is this love — between siblings, between parents and daughter, between family and community — that has sustained them through every challenge.
What it means from a medical-science standpoint is far more complex. In hydranencephaly, the brain’s cerebral hemispheres are largely absent, replaced by cerebrospinal fluid. The cerebellum – which regulates some reflexes and balance – may remain partially intact. But the cerebral cortex, which gives rise to consciousness in the usual sense, is severely underdeveloped or missing. That reality tends to mean a lifespan measured in months, not years. Yet Alex’s life shows us the extent to which human care, environment, and unknowns in neuroscience can challenge statistical expectation.
Speaking with local news station KETV in Omaha, Shawn spoke of his daughter in unguarded honesty: “(Hydranencephaly) means that her brain is not there… technically, she has about half the size of my pinky finger of her cerebellum… but that’s all that’s there.” At that moment, the clinical diagnosis was chilling; the love that followed was fierce.
In the household, Alex has become a central figure in every sense. For brother SJ, she is both sibling and inspiration. “When people ask about my family, the first thing I start with is Alex, my disabled sister,” he said. His protective pride, his understanding of her subtle cues, and his family’s customary inclusion of Alex in the fabric of everyday life speak to the power of redefining what life and ability mean.
For her parents, each birthday, each milestone, each quiet afternoon of connection counts. There are no grand celebrations in the sense of the ordinary teenage party; instead there is gratitude for survival, and for the small joys that many of us take for granted. It is not easy: the equipment, the constant monitoring, the hospital visits, the emotional toll of the “what ifs” — all remain part of their daily reality. But against that backdrop, the Simpsons choose to focus on what they have: Alex, alive and present, part of their family story.
Clinicians who follow cases of hydranencephaly caution that survival like Alex’s remains extraordinarily rare; each case varies widely, and long-term outcomes are unpredictable. What researchers cannot yet fully explain is how some patients survive far longer than expected, or what degree of awareness they may possess. The Simpson family’s belief in Alex’s perceptive capacity — even without sight or hearing — adds another dimension to the conversation, one where science meets mystery and society meets compassion.
That the world is noticing now, in 2025, is also significant. Human interest features such as this pull us away from our hurried lives and remind us of what it means to care. They remind us of the countless hours of caregiving often invisible to outside observers, of the subtle triumphs beyond the spotlight, and of the quiet dignity of every human life regardless of ability. Alex’s story is not just about defying medical odds—it is about being seen, being valued, being loved.
As coverage of her story spreads, there is a conversation stirring about how society treats individuals with severe disabilities: about inclusion, about caregiving as a shared community responsibility, about how we measure a life’s value not by typical milestones but by presence, connection, and resilience. In a world where ability is too often measured in conventional terms, Alex’s life invites us to reconsider what it means to be human.
On that 20th birthday, as balloons were released, cake was shared, and pictures were taken, the Simpson family did not celebrate cure or recovery. They celebrated life itself — fragile, unique, fragile again, and yet enduring. They celebrated the presence of their daughter, who will never walk or talk or see the world in familiar terms, yet whose existence has shaped a family, inspired a brother, and captivated a wider audience.
In her story there is no false miracle medicine, no triumphant “overcoming” stereotype in the usual sense. Instead there is quiet heroism in endurance, in daily work of love, in the embrace of uncertainty, and in choosing hope when the odds say otherwise. For Alex, the journey continues. For her family, the journey is everyday but extraordinary. And for all of us who learn of her life, it is a reminder that every human existence carries meaning beyond measure.
As the Simpson family looks beyond that milestone twentieth year, they carry the same mixture of hope and realism they always have: hope for comfort, connection, perhaps more years; realism about what life will look like day to day. They know how fragile each moment can be. They also know that the gift of each breath — and each heartbeat — is nothing to take for granted.
In the end, this is not a story about a medical anomaly. It is a story about love, care, family, time, and what happens when we refuse to define someone by what they cannot do. On November 4, 2025, in an Omaha home filled with gentle sounds, shared presence, and celebration, 20 candles were lit—not to mark a miracle cured, but a miracle sustained.
