Parents Celebrate Twenty Years With Daughter Born Without a Brain

Most milestone birthdays arrive with balloons, cake, and a sense of time passing. But for the Simpson family in Omaha, Nebraska, Alex’s twentieth birthday became something much bigger. It was a moment they once feared they would never see. A moment that doctors told them was impossible. A moment that defied medical expectations and reshaped the boundaries of what survival can look like.

Alex Simpson was born with hydranencephaly, a rare and devastating neurological condition that leaves a baby without the cerebral hemispheres that make up most of the brain. In Alex’s case, the condition left her with only a tiny portion of cerebellar tissue, described by her father as half the size of his pinky finger. When she was diagnosed at two months old, medical professionals warned her parents that she would likely not live beyond the age of four.

Yet two decades later, Alex is still here. Her family credits their constant love, steadfast faith, and her remarkable resilience. Her story has since spread far beyond Nebraska, touching families, doctors, and caregivers who see in her survival a powerful reminder of the human spirit.

This is the story of how a girl born without a brain reached twenty years of life, and how the people who love her have redefined what hope can mean.

A Rare Diagnosis That Changed Everything

When Alex was born, her parents Shawn and Lorena believed they had a healthy newborn. She was responsive, calm, and showed no immediate signs of a neurological condition. It was not until her two month checkup that their world shifted.

Doctors discovered that Alex had hydranencephaly, a rare developmental disorder that occurs in an estimated one in 5000 to one in 10000 pregnancies. The condition results in the absence or severe destruction of the cerebral hemispheres, often replaced by cerebrospinal fluid. These hemispheres are responsible for thought, language, sensory interpretation, voluntary movement, and coordination of higher functions. Without them, most infants do not survive their first year.

In interviews over the years, Shawn and Lorena have recalled the shock of the diagnosis. They were told that their daughter would be blind and deaf, would never speak or interact, and, most devastating of all, would almost certainly not live past early childhood. Hydranencephaly, doctors explained, had no cure. Treatment was limited to comfort and supportive care.

The family described those early months as a period of constant fear. Lorena once shared that for three years she slept beside Alex every night, listening for her breathing, terrified that each night might be her last. It was a kind of vigilance that many families of children with severe medical needs know all too well: the unrelenting mixture of love and anxiety that becomes a way of life.

Yet, despite the heartbreak of the diagnosis, Shawn and Lorena made a decision. They would embrace whatever time they had with their daughter. They would love her fiercely and take every day as its own blessing.

Life With Hydranencephaly: Fragility and Strength

Living with hydranencephaly means living with profound disabilities, but it also means navigating a world full of moments others cannot see. Alex cannot see or hear, but her family insists she can sense when her loved ones are near. They describe her responses as subtle but unmistakable.

Shawn remembers stepping toward her, speaking to her softly, and seeing her eyes attempt to find him. SJ, her younger brother, shares stories of how Alex responds to emotions rather than sound. He told reporters that she knows when someone in the house is stressed, even if the room is silent. She can sense tension, sadness, or discomfort. When his grandmother experiences back pain, Alex seems to mirror that discomfort, almost as if absorbing the energy in the room.

Hydranencephaly brings severe limitations, yet Alex’s presence in her family’s life has created a new way of understanding connection. It is not built on words or shared conversations but on emotion, closeness, and intuition. Many parents of medically fragile children describe something similar. They speak of communication that happens without speech, of a bond that grows through touch and presence rather than gestures or language.

Medical literature notes that infants with hydranencephaly may appear typical at birth. Symptoms often emerge gradually, including poor feeding, seizures, irritability, blindness, and profound developmental delays. Yet each child presents differently, and families often become experts in their child’s specific needs.

For the Simpsons, caring for Alex has meant adapting constantly. Over the years, they have learned how to manage her seizures, navigate feeding challenges, and respond to the subtle ways she communicates her discomfort. It has also meant juggling medical appointments, securing supportive devices, and creating a home environment built around her comfort and safety.

The Power of Family: Love as a Lifeline

When asked how Alex survived long past the age doctors predicted, her parents answered with one word: love. It is a response that might sound simple, but for families caring for someone with a life limiting condition, love becomes both a foundation and a daily practice.

Shawn has described their journey as one guided by faith. At the time of her diagnosis, he said they were terrified, unsure of their future, and overwhelmed by uncertainty. But it was their faith that carried them through, giving them patience and courage as they learned how to care for Alex.

Lorena has echoed this belief. She often describes Alex as a fighter, someone who holds on despite every barrier placed before her. That resilience fuels her parents, who see every year as a triumph, every milestone as a victory.

Their son SJ has grown up in a household shaped by Alex’s needs, and he speaks of her with pride. He introduces her first when people ask about his family, emphasizing that she is an important part of his identity. In many ways, Alex has shaped who he is: compassionate, emotionally attuned, and eager to understand her condition. He has spent time researching hydranencephaly to better understand how best to support her.

Families of children with significant disabilities often describe similar transformations. They talk about building deeper empathy, celebrating small moments, and finding meaning in experiences that might seem ordinary to others. The Simpsons are no exception. Their lives revolve around Alex, not out of obligation, but out of love.

A Medical Rarity: Survival Against the Odds

From a medical standpoint, Alex’s survival is extraordinary. Hydranencephaly is associated with high mortality rates. Many infants die within months, often due to complications such as seizures, respiratory failure, or difficulty feeding. Survival beyond childhood is extremely rare.

Research indicates that supportive care can help extend life expectancy, particularly when families have access to adequate medical resources and understand how to manage symptoms. But even with the best care, survival into adulthood is uncommon.

Doctors estimate that the condition affects between one in 5000 and one in 10000 pregnancies, but the range of outcomes varies widely. Some babies appear typical in their first days or weeks, making early detection challenging. Diagnosis often comes through imaging such as MRI or CT scans, which reveal the absence of the cerebral hemispheres.

Hydranencephaly is believed to be caused by injury to the developing brain during pregnancy, which may stem from a stroke, infection, or other trauma. The destruction of brain tissue leaves fluid filled areas in place of the cerebral hemispheres.

Despite these medical realities, families like the Simpsons often find that their child’s story defies expectations. Alex is living proof that survival does not always follow predicted timelines. While her condition cannot improve or reverse, the care, emotional support, and stability she receives have undoubtedly contributed to her longevity.

Her story adds to the growing understanding that even with severe neurological conditions, life can continue in ways that medical textbooks do not always fully capture.

The Emotional World of Caring for Alex

Caring for a child with profound disabilities can be emotionally draining and deeply rewarding at the same time. For the Simpson family, the journey has included sleepless nights, ongoing medical uncertainties, and moments of fear. But it has also included a kind of emotional closeness that is sometimes lost in typical day to day life.

Lorena once shared how she spent years sleeping beside Alex, listening for subtle changes in her breathing. It was a constant reminder that every moment mattered. That closeness has shaped their bond, creating a form of communication that relies entirely on intuition and presence.

The family also speaks openly about the negative comments they have received. Some people, unaware of hydranencephaly or unfamiliar with severe disabilities, have dismissed Alex as vegetative or questioned her quality of life. Shawn has pushed back against these assumptions, stating that Alex’s life has value, purpose, and joy. He believes wholeheartedly that all people, regardless of ability, deserve to experience life to the fullest extent possible.

Their story highlights a broader societal issue. Many families caring for children with complex medical needs confront assumptions about what makes a life meaningful. For the Simpsons, meaning is not measured in milestones like walking, talking, or going to school. It is measured in connection, resilience, and love.

Love, Faith, and the Strength of the Human Spirit

Alex’s twenty year journey offers powerful lessons that extend beyond her medical condition. Alex is a reminder that survival is not always predictable. Her ability to live far beyond medical expectations underscores the resilience of the human body and spirit.

Her story reveals the profound impact of emotional support and presence. Families caring for medically complex children often speak of emotional intelligence that grows from these experiences, deepening their understanding of what it means to love without conditions.

Alex’s life challenges stereotypes about disabilities and what constitutes a fulfilling life. Her family emphasizes that her existence brings meaning and connection, even though she cannot communicate in typical ways.

For the Simpsons, faith has been a guide through uncertainty. Their belief in Alex’s value and strength has shaped their journey and given them courage. Caregiving can be physically exhausting and emotionally demanding. Yet it can also be a source of profound purpose. The Simpsons demonstrate how caregiving can transform a family, reshape priorities, and reveal unexpected forms of closeness.

A Life That Redefines Possibility

Alex Simpson’s story is not a miracle in the sense of sudden, unexplainable transformation. It is a miracle built over twenty years, shaped by commitment, compassion, and the everyday devotion of a family that refused to give up hope. Her survival defies medical statistics, but her impact reaches far beyond those numbers.

In a world often focused on capability and achievement, Alex reminds us that value is not defined by what a person can do. Sometimes, it is defined by the love they inspire, the strength they reveal in others, and the quiet ways they change the people around them.

As the Simpson family looks ahead, they celebrate not just Alex’s twentieth birthday but everything she represents. A life once predicted to last only a few years has become a story of resilience, connection, and the enduring power of love.