Brendan's Story
Brendan Staub’s story began long before doctors had answers.
In 2004, Brendan started having seizures. At first, they were concerning. Then they became relentless. By the age of 10, Brendan was experiencing 50 or more seizures a day. Eventually, some days climbed close to 100. His childhood quickly became filled with hospitals, testing, uncertainty, and fear no parent is ever prepared for.
An MRI revealed bilateral calcifications on Brendan’s brain, but the deeper cause remained unclear. Over time, doctors would also discover similar calcifications in Brendan’s kidneys, which eventually led to kidney failure, adding yet another life-changing medical battle to an already overwhelming journey.
When Brendan was 9 years old, his mom began noticing major emotional changes that lasted for extended periods of time. She knew something was wrong.
Even though Brendan had already undergone an MRI just four months earlier, she pushed for another one.
Dr. Christina Gurnett explained that it would be very unlikely for something to grow that quickly in the brain. Still, she listened and ordered the scan.
That MRI changed everything.
Doctors discovered a rapidly growing tumor in Brendan’s right temporal lobe.
The tumor was removed, and the family hoped the seizures would finally improve. Instead, the opposite happened. Brendan’s seizures intensified, sometimes reaching nearly 100 a day. Then another devastating chapter began.
Brendan started experiencing stroke-like signaling activity in both his right and left temporal lobes. Over time, the activity spread into his occipital lobes, the area of the brain responsible for vision. For years, doctors watched an exhausting cycle repeat itself: Brendan’s brain would partially heal, only to be attacked again by more stroke-like activity.
Healing.
Damage.
Healing.
Damage.
Over and over again.
Then one moment changed the course of everything.
When Brendan was around 10 or 11 years old, his dad called home with concern. Brendan did not want to go to baseball practice. That may not sound unusual for most kids, but for Brendan, it was completely out of character. He loved sports. He was naturally athletic and competitive. Baseball was part of who he was.
Soon after, the family began noticing something terrifying.
Brendan could no longer see things clearly.
Over time, they learned the stroke activity had severely damaged his occipital lobes. Brendan became legally blind.
Eventually, Brendan needed a seeing-eye dog to help him safely navigate school and daily life.
As Brendan’s condition worsened, the family traveled to Mayo Clinic searching for answers and treatment options. At the time, doctors recommended an experimental treatment using IVIG (immunoglobulin) in hopes of slowing the stroke-like episodes and controlling Brendan’s seizures.
Brendan’s mom remembers sitting in the hospital terrified before the first infusion.
She asked the nurse if anyone had ever died from the treatment.
The nurse looked at her like she was crazy, but the fear was real. She was there alone. The family had been traveling to the Mayo Clinic two to three times a month, and Brendan’s dad needed to stay home to work and care for their daughter.
Before the infusion fully began, she told the nurse she was going to quickly run to the Ronald McDonald House to take a shower.
When she returned to the hospital, the treatment had started.
Within minutes, Brendan began convulsing and stopped breathing.
The treatment was immediately stopped.
Thankfully, Brendan recovered.
The next day, doctors asked if they could try the treatment again with additional precautions because they believed Brendan had experienced an allergic reaction to the IVIG. Brendan’s parents were skeptical and terrified, but after careful discussion, they agreed to try again at a much slower infusion rate.
This time, the treatment was spread out over several days.
Brendan tolerated it.
That moment started a years-long journey with IVIG treatments.
For years, Brendan was admitted to the hospital every two weeks for two-day treatment cycles. It became their normal. Hospital rooms became part of childhood. Schedules revolved around infusions, recovery, monitoring, and hope.
And slowly, something remarkable happened.
The seizures began improving.
Eventually, after years of treatment, Brendan was successfully weaned off IVIG. Today, Brendan lives what his family calls a normal life for him. Instead of dozens or hundreds of seizures a day, he now experiences only occasional mild seizures, sometimes as little as one per month.
For years, Brendan’s condition remained a mystery.
While most people would have accepted the unknown, Brendan’s family kept searching. If anyone mentioned a child with symptoms even remotely similar to Brendan’s, his mom scheduled a call. She spent years trying to find another family walking the same road, hoping somewhere there were answers doctors had not yet found.
Then came the call that changed everything.
A few years ago, Brendan’s pediatric neurologist, Dr. Christina Gurnett, contacted the family with news they had waited years to hear.
They had found other cases like Brendan.
Researchers had begun identifying additional patients connected to the HECTD1 variant, helping piece together what had once seemed impossible to understand. With the continued support of Dr. Gurnett and her colleagues, the family finally began moving in the direction they had been searching for all along:
Answers.
Brendan’s journey also became the foundation for something much bigger than one diagnosis.
Out of pain came purpose.
His story inspired the creation of Brendan’s Buddies in St. Louis, a community-driven organization dedicated to supporting individuals with developmental disabilities, funding neurological and genetic research, and helping families feel less alone in impossible situations.
Brendan’s life has impacted doctors, researchers, teachers, friends, and an entire community. His story has helped fuel research efforts into rare neurological and genetic disorders, including HECTD1-related conditions, while also reminding people what strength really looks like.
Because Brendan’s story is not just about seizures, blindness, kidney failure, or hospital stays.
It is about perseverance when life keeps changing the rules.
It is about parents refusing to stop fighting for their child.
It is about trusting instincts when no one has answers.
And it is about a young man from St. Louis whose story may ultimately help change the future for families around the world.