Amy and Brett’s 17-Year Journey to Answers
After years of unexplained dizziness, missed opportunities, and countless medical appointments, a mother and son finally find answers—and a new way to share their story.
When Amy Hendrickson’s son Brett was nine years old, their lives changed in an instant. Brett’s father and younger brother were killed in a car accident, leaving Amy to navigate unimaginable grief while raising a young boy who had just lost his dad and sibling.
Neither could have anticipated that this tragedy would mark the beginning of another long and difficult journey—one that would take nearly two decades to understand.
In the months following the accident, Brett began experiencing severe anxiety and panic attacks. At night, he would struggle to breathe, overwhelmed by fear. Amy would sit beside him, encouraging him to take deep breaths and counting with him until the panic subsided.
As time went on, Brett began having more difficulty at school. Already diagnosed with ADHD at age three, he struggled with attention, behavior, and learning. He increasingly resisted going to school, and Amy regularly received calls from teachers about his inability to participate or function in the classroom.
At the time, the explanations seemed reasonable. Brett was grieving. He had ADHD. He was struggling emotionally after a devastating loss.
But something else was happening that neither Amy nor Brett could fully understand.
When a Child Can’t Explain What’s Wrong
Amy doesn’t remember exactly when Brett first began complaining of dizziness. Much of that period remains a blur, overshadowed by grief and exhaustion.
What she remembers clearly is how difficult everyday life became.
Getting Brett ready for school could be an exhausting battle. By the time she dropped him off, Amy often felt as though she’d already worked an entire day. Then the calls from school would begin.
Brett frequently said he didn’t feel well, but he couldn’t explain exactly what was happening to him. His behavior was interpreted through the lens of ADHD, anxiety, and grief.
Looking back, Amy wonders how much of his behavior was actually a response to physical symptoms he didn’t have the words to describe.
“He’s young; he doesn’t understand what’s happening to him. So how could I have known?”
Amy sought help wherever she could. She took Brett to counselors, therapists, physicians, and specialists. Whenever someone recommended another appointment or evaluation, she followed through.
But the appointments rarely brought answers.
Instead, Amy felt caught in an endless cycle of referrals, repeating Brett’s complicated history to one professional after another, only to be sent somewhere else.
As Brett grew older, his symptoms became increasingly debilitating.
He experienced episodes of severe dizziness, sometimes lasting just minutes and other times continuing for hours or even overnight. His coordination deteriorated, and he often felt as though he might faint. Lying down was sometimes the only thing that provided relief.
When Brett was old enough to work, he tried taking a job at a grocery store. But the fluorescent lighting and other environmental stimuli made his symptoms worse.
He sometimes called Amy from work, telling her he was so sick that he was lying on the restroom floor.
For Amy, these experiences made it increasingly clear that something more than anxiety or behavioral challenges was affecting her son.
Yet the answers remained elusive.
A Family Connection That Went Unexplored
Throughout Brett’s childhood, Amy repeatedly shared a detail she believed was important: Brett’s father had experienced remarkably similar episodes before his death.
His symptoms would appear suddenly, sometimes in the middle of ordinary activities or family gatherings. Amy could often recognize an episode simply by looking at his face.
Like Brett, his father found some relief by lying down.
Doctors had attributed his symptoms to anxiety and panic attacks, prescribing medication to help manage them. Although his episodes were generally less debilitating than Brett’s, he never received an explanation for the underlying cause.
Amy brought up this family history at nearly every medical appointment.
“The very first thing I told them was that his dad also had the very same symptoms,” she recalls.
But no one seemed able to explain the connection.
For years, Amy continued searching for answers, convinced that this shared experience might be an important clue.
She would eventually learn just how significant it was.
Finally, a Vestibular Diagnosis
It wasn’t until Brett was in his twenties that a neurologist first suggested vestibular migraine.
For Amy, who experiences migraines herself and has several family members with migraine, the diagnosis was confusing.
She associated migraine with severe headaches, vomiting, and sensitivity to sound. She had never heard of a migraine disorder in which dizziness could be a predominant symptom.
“What the heck is that?” she remembers thinking.
Although the diagnosis finally gave Amy something specific to research, she was frustrated by how little information they received.
They were told Brett had vestibular migraine, but they weren’t given a clear explanation of what that meant or how to manage it.
Amy began researching the condition extensively. After years of searching broadly for information about dizziness, she finally had a name that could help guide her efforts.
Still, she and Brett had doubts. His symptoms didn’t resemble the migraines Amy knew, so they sought another neurological opinion, which supported the diagnosis.
Treatment, however, was not straightforward.
Brett tried multiple medications with little success. Eventually, one medication provided some relief, but his episodes continued to occur frequently and unpredictably.
By then, his symptoms had become so disabling that he could no longer maintain employment.
Amy also began learning about lifestyle strategies for managing vestibular migraine, including identifying environmental triggers, maintaining consistent routines, and considering dietary changes.
But implementing these strategies proved difficult.
Brett might have two relatively good days followed by four or five days of severe symptoms. Establishing consistent habits was challenging when he never knew how he would feel from one day to the next.
For years, Amy had encouraged him to push through his symptoms, believing that doing so might help him regain normal activities. With a better understanding of vestibular disorders, she began recognizing the importance of adapting activities and managing triggers.
Even ordinary errands could be difficult. Grocery shopping sometimes required ordering food online or having Amy pick up what he needed.
The unpredictability of his symptoms continued to shape nearly every aspect of his life.
A Genetic Discovery After 17 Years
Recently, Amy and Brett received a new piece of information that may finally explain the family connection Amy had questioned for so long.
After approximately 17 years of searching for answers, genetic testing identified episodic ataxia type 2, a rare inherited neurological disorder that can cause recurring episodes of dizziness, imbalance, and impaired coordination.
The results indicated that Brett had inherited the condition from his father.
For Amy, the discovery was both validating and heartbreaking.
She had spent years telling healthcare professionals that Brett’s father experienced similar symptoms, yet the connection had never been fully investigated.
Brett’s father died at age 36 without knowing what was causing his episodes. He had lived with the belief that his symptoms were related to anxiety or panic.
Now, nearly two decades later, Amy and Brett have a new explanation that may help them better understand the symptoms that have affected two generations of their family.
The diagnosis doesn’t erase the years of uncertainty or the opportunities Brett has lost. But it represents a significant step toward understanding his condition and exploring more targeted approaches to care.
The Invisible Toll on a Mother
While Brett was struggling with his health, Amy was carrying an enormous burden of her own.
Following the accident, she was suddenly a single mother navigating profound grief while trying to care for a child with increasingly complex needs.
She was also trying to work.
Frequent calls from school meant leaving her job to pick Brett up or attend meetings. Medical appointments, behavioral challenges, and the constant search for answers consumed much of her time and energy.
Amy rarely had an opportunity to focus on her own emotional needs.
“My grief had to sit on the back burner,” she explains. “Brett needed me. I mean, who else could he depend on?”
Looking back, she wonders whether she ever truly had the chance to grieve the loss of her husband and younger son.
There were moments when she felt completely overwhelmed.
Watching Brett suffer without being able to help was especially painful.
“How do you watch your child suffer, and you feel so helpless?” she asks. “What more can I do? I don’t know what more to do.”
Although Amy had a large and supportive extended family, accepting help wasn’t always easy.
Her parents and seven siblings were willing to spend time with Brett, take him on outings, or provide a break when Amy needed one.
But Amy often felt guilty asking.
And because Brett’s medical history was so complicated, she found it difficult to let someone else take him to appointments. She had attended every visit and knew the details of his symptoms, diagnoses, and treatments.
Handing over that responsibility felt almost impossible.
“I just felt like he’s my responsibility,” she says.
It’s a feeling familiar to many family caregivers: the belief that they must somehow manage everything themselves, even when the responsibility becomes overwhelming.
Learning to Let Go Without Letting Go
Today, Brett is 27 and lives independently in an apartment about seven minutes from Amy.
Although his symptoms continue to limit his activities, Amy is proud of how much responsibility he has taken for his own life.
Over time, Brett has also become more involved in advocating for his medical care.
Amy has encouraged him to explain his symptoms directly to healthcare professionals, reminding him that while she can describe what she observes, only he can communicate what he’s actually experiencing.
It’s been a learning process for both of them.
As Brett has grown into adulthood, Amy’s role has evolved from managing nearly every aspect of his care to providing support while respecting his independence.
She visits several times a week, helps with errands, and encourages him to get out of the house when he feels well enough.
Sometimes they go out for ice cream, a meal, or a movie.
Other days, when Brett is too dizzy or exhausted to leave home, they simply spend time together watching television and sharing a meal.
He also has a dog that provides valuable companionship, although Amy sometimes needs to help with the dog’s care when Brett isn’t feeling well.
Amy worries about the isolation that can accompany chronic illness, particularly because Brett has a relatively small social circle.
Even when she’s not physically with him, she’s often thinking about how he’s doing and whether there’s something more she could do to help.
“It is exhausting,” she admits. “Even when I’m not there, I’m constantly worrying about him.”
At the same time, Amy has begun reclaiming some space for herself.
She has remarried, and she and her husband live in a home surrounded by woods. Spending time outdoors has become an important source of peace and restoration.
She describes their home as her safe haven.
Although she remains deeply involved in Brett’s life, she’s learning that supporting him doesn’t always mean being constantly present.
When he’s having a good day, she tries to give him space to enjoy his independence.
And when he needs her, he knows she’s there.
Finding His Voice Through Music
One of the most meaningful developments in Brett’s journey has been an unexpected creative outlet: songwriting.
One day, Brett surprised Amy by telling her he had written a song.
He began sharing music inspired by his experiences with vestibular symptoms, the loss of his father and brother, and the isolation of living with an invisible illness.
For Amy, listening to his songs was an emotional revelation.
For much of his life, Brett had struggled to describe his symptoms. He rarely wanted to talk about his illness, often feeling embarrassed by the idea of telling others he was dizzy.
But through music, he began expressing feelings and experiences that had remained largely hidden.
“Once he started writing these songs, it’s just opened up my eyes,” Amy says.
The music helped Amy, her husband, and other family members better understand what Brett had been experiencing all along.
It also gave Brett a way to connect with others.
He has shared some of his songs through VeDA’s Facebook community, hoping they will reach people who feel similarly isolated or misunderstood.
Amy believes his motivation comes from knowing firsthand what it feels like to live with an illness that others can’t see.
“He knows what it feels like to be alone. He knows what it feels like to be misunderstood, and he knows what it feels like to feel invisible.”
Through his music, Brett wants others living with vestibular disorders to know they aren’t alone.
For Amy, his songwriting has also become a powerful reminder of his resilience and creativity—qualities that have remained strong despite years of illness.
Some of his songs have even been written for her.
Although Brett may not always express his appreciation verbally, his music has given him another way to acknowledge the support his mother has provided throughout his life.
Check out Brett’s songs on Spotify.
A Message to Other Caregivers: You’re Not Alone
After nearly two decades of supporting Brett, Amy has learned lessons she hopes will help other families navigating chronic vestibular disorders.
Her first message is simple: listen.
“Really listen to what they’re telling you about their symptoms, about what they’re feeling, what they’re experiencing.”
She knows firsthand how difficult it can be to understand symptoms that aren’t visible, particularly when a child struggles to articulate what is happening.
She also encourages caregivers to trust their instincts and continue advocating when they believe something is being overlooked.
For Amy, persistence has meant asking questions, researching unfamiliar conditions, seeking second opinions, and standing up for Brett when she felt his concerns weren’t being taken seriously.
But she’s also learned that caregivers have limits.
“Understand that there is only so much that a caregiver can do,” she says. “I try to do everything, and you can’t.”
It’s a lesson that has taken years to accept.
Amy encourages other caregivers to give themselves permission to experience their own emotions, ask for help, and step away when they need to.
Caregiving can be an act of extraordinary love, but it can also bring exhaustion, frustration, isolation, and grief.
Recognizing those feelings doesn’t diminish a caregiver’s devotion.
It acknowledges that caregivers are human, too.
Above all, Amy wants other families to know that they don’t have to face the journey alone.
“Never stop fighting,” she says. “But as a caregiver, you really do have to give yourself grace and understand that you’ve got to take care of you in order to be able to take care of them.”
After 17 years of uncertainty, Amy and Brett’s journey continues. His symptoms remain a significant part of daily life, and they are still learning how best to manage his condition.
But they have gained something important: a deeper understanding of his illness, a stronger ability to advocate for his needs, and a way to connect with others who share their experiences.
Their story is a testament not only to a mother’s determination, but also to the resilience of a young man who continues to find ways to express himself, seek independence, and help others feel less alone.
And it’s a reminder that behind many people living with vestibular disorders are family members whose lives have been profoundly changed as well—people whose love, persistence, and support deserve to be seen.