When Alex Simpson was born in Omaha, Nebraska, in 2005, her family initially believed they had welcomed a healthy baby girl. Everything appeared normal until she was about two months old, when doctors discovered that she had a rare and devastating neurological condition known as hydranencephaly.

Hydranencephaly is an extremely rare congenital condition in which the cerebral hemispheres—the largest parts of the brain responsible for functions such as thought, voluntary movement and sensory processing—are largely absent and replaced by cerebrospinal fluid. Other structures, including parts of the brainstem and cerebellum, may remain.

For Alex’s parents, Shawn and Lorena Simpson, the diagnosis was devastating. According to the family, doctors warned them that their daughter was unlikely to survive beyond the age of four.

But Alex continued to live.

A Diagnosis That Changed Everything

According to her father, Alex has only a very small portion of cerebellar tissue remaining. He described it as approximately half the size of his little finger.

The condition also means that the parts of the brain normally responsible for vision and hearing are absent. As a result, Alex cannot see or hear in the conventional sense.

Yet her family says that she has developed a recognizable personality and appears responsive to the people around her.

Her father described moments when Alex appears to search for him when he approaches and speaks to her. Her younger brother, SJ, also believes that she can respond to the emotional atmosphere around her. These observations come from the family and should not be interpreted as evidence of abilities that have been scientifically established.

She Reached the Milestone Doctors Never Expected

Alex’s fourth birthday became an important milestone because her doctors had warned that she might not live that long.

Then came 10.

Then 15.

And on November 4, 2025, Alex celebrated her 20th birthday. KETV, which had previously reported on Alex when she was younger, returned to meet the Simpson family and document the extraordinary milestone.

Her parents say that Alex has become calmer and healthier as she has grown older.

Looking back on two decades of caring for their daughter, Shawn and Lorena have credited love and faith for helping their family through the uncertainty that followed her diagnosis.

A Life Built Around Family

Alex requires extensive care, and her family has adapted their daily lives around her needs.

Her younger brother SJ, now a teenager, has grown up alongside Alex and has made an effort to learn about her condition so that he can better understand and support his sister.

For him, Alex is not defined by her diagnosis.

She is simply his sister.

He told KETV that when people ask about his family, Alex is the first person he talks about.

That family bond has remained central to Alex’s story.

What Makes Alex’s Story So Unusual?

Hydranencephaly is considered a severe condition with a generally poor prognosis. Many affected infants do not survive long, although outcomes can vary considerably from one patient to another. Alex’s survival into adulthood is therefore highly unusual.

However, calling Alex a person who was literally “born without a brain” can be misleading.

She was not born with absolutely no brain tissue. Rather, she was born with hydranencephaly, in which most of the cerebral hemispheres are absent while other neurological structures remain. This distinction is medically important.

There is also no reliable evidence that Alex has “rewritten the laws of aging” or that her survival has disproved established medical science. What makes her case remarkable is much more specific: she has lived for 20 years with an exceptionally severe neurological condition despite the poor prognosis given to her family.

Twenty Years of Hope

For the Simpson family, Alex’s 20th birthday was not simply another birthday.

It represented two decades of uncertainty, intensive care, family commitment and countless moments that doctors once believed might never happen.

The little girl who was not expected to reach four became a young woman who reached 20.

Her story does not change what medicine knows about hydranencephaly. Instead, it reminds us that individual patients can sometimes live far beyond the expectations associated with an exceptionally severe diagnosis.

And for Alex’s family, the explanation remains beautifully simple.

Twenty years ago, they were afraid of losing their daughter. Today, they are celebrating the fact that she is still here.

Sources

• KETV News / CNN Newsource — “’She’s a fighter’: KETV reconnects with inspiring family whose daughter was born with nearly no brain,” November 2025.
• ScienceAlert — “Woman Born Missing Most of Her Brain Just Turned 20, Defying Odds,” November 2025.
• People — “Woman Born Without a Brain Turns 20 After Doctors Believed She Wouldn’t Live Past 4 Years Old,” November 2025.
• VnExpress — “Cô gái ‘gần như không não’ sống sót kỳ diệu,” November 2025.
• People en Español — “Mujer nacida sin cerebro desafía las expectativas y celebra los 20 años con el amor de su familia,” November 2025.