But Alex’s story took a different path.
Years passed.
Then birthdays came and went.
And in 2025, Alex reached a milestone her family once feared might never happen:
Her 20th birthday.
A Diagnosis That Changed Everything
Alex was born in Nebraska and initially appeared to be a healthy baby.
When she was around two months old, however, her parents learned about her neurological condition.
Hydranencephaly is an exceptionally rare developmental disorder affecting the brain. The extent of the condition and its effects can vary, and people who live with it may require significant medical and daily support.
For Shawn and Lorena, the diagnosis meant facing an uncertain future while learning how best to care for their daughter.
The family has said that doctors initially expected Alex’s life to be much shorter.
For parents welcoming a new child, hearing such a prognosis can be overwhelming.
Rather than trying to predict every year ahead, the Simpsons focused on the days immediately in front of them.
One Birthday at a Time
As Alex grew older, each birthday became meaningful.
Five years old.
Ten years old.
Her teenage years.
And eventually, adulthood.
Reaching 20 was particularly significant because it represented a point in Alex’s life that her parents once weren’t sure they would ever see.
When her family reflected on how Alex had made it through the years, they emphasized the importance of love, family support and their commitment to caring for her.
Her father has also spoken about how his faith helped the family cope with the uncertainty surrounding Alex’s early diagnosis.
Her Mother Remembers the Early Years
The first years were especially difficult for Lorena.
According to the family, she spent many nights close to her daughter, worried about Alex’s health and uncertain about what the future might bring.
For families living with serious medical conditions, ordinary milestones can take on a different meaning.
A birthday may represent far more than another year.
It can become a reminder of everything a family has experienced together.
For the Simpsons, Alex’s 20th birthday represented two decades of memories that once seemed impossible to imagine.
Alex Lives With Significant Disabilities
Alex continues to live with substantial disabilities related to her condition and requires extensive assistance.
Her family has described her as having profound limitations affecting her ability to interact with the world in conventional ways.
At the same time, her relatives believe she responds to the people around her.
Her father has described moments in which he feels Alex recognizes his presence. Her younger brother, SJ, has similarly shared his belief that she may respond to the emotions of people nearby.
These observations are personal experiences reported by the family and should not be interpreted as medical conclusions.
For them, however, these moments have become meaningful parts of their relationship with Alex.
Growing Up With a Sister Who Needs Extra Care
Alex’s story also includes her younger brother, SJ.
He has grown up alongside his sister and has experienced the realities of having a family member who requires extensive care.
That experience has become part of his understanding of family and compassion.
Rather than seeing Alex only through the lens of her diagnosis, the family describes her simply as a daughter and sister who has been part of their lives for two decades.
That distinction matters.
A medical condition can explain some of the challenges a person faces, but it cannot describe everything that person means to the people who love them.
Her Father Wants People to See the Person, Not Just the Diagnosis
Over the years, Shawn has also spoken about the way people sometimes react to severe disability.
His message has been that disability should never determine a person’s value or place within a family.
Alex’s life is not simply a story about proving a medical prediction wrong.
It is also a story about the everyday experiences shared by a family: caring for one another, adapting to challenges, celebrating milestones and finding meaning in ordinary moments.
For Shawn and Lorena, their daughter’s importance was never dependent on whether she could meet conventional expectations.
Their priority was providing Alex with care, comfort and connection.
Two Decades That Once Seemed Impossible
When Alex was an infant, her parents had to prepare themselves for an uncertain future.
Instead, they watched her grow through childhood and adolescence and eventually reach adulthood.
Her 20th birthday did not erase the challenges associated with her condition.
It did, however, give her family an opportunity to celebrate a milestone that once seemed far beyond their expectations.
And perhaps that is what makes the story so moving.
Beyond the Medical Diagnosis
Stories about rare medical conditions can easily become focused on statistics, predictions and dramatic headlines.
But behind every diagnosis is a person and a family living with the reality every day.
There are medical appointments and difficult nights.
There are adaptations and challenges.
But there can also be birthdays, family traditions, laughter, memories and moments of connection.
For the Simpson family, Alex is not simply a diagnosis.
She is Alex—their daughter, their sister and a beloved member of their family.
Twenty years after her parents first received an uncertain prognosis, reaching adulthood gave them something they once weren’t sure they would have:
more time together.
This article is intended for general informational and human-interest purposes. Hydranencephaly is a serious and rare neurological condition, and individual experiences can differ considerably. Medical questions should be discussed with qualified healthcare professionals.