Our Story
Our family is like many others in some ways—and unlike most in others.
We are a family of eight. We laugh together, cry together, celebrate milestones together, and hold each other up through unimaginable heartbreak. Our lives have been shaped by extraordinary love, relentless resilience, and challenges we never imagined we would face.
Our journey changed forever when our youngest daughter, Ailyn, was born with an extremely rare genetic condition that affects nearly every system in her body.
From the day she entered this world, she has been fighting for her life.
Ailyn was born with complex congenital heart defects, including a hypoplastic aortic valve, hypoplastic aortic arch, and a hypoplastic ascending aorta. She has undergone multiple open-heart surgeries, numerous cardiac catheterizations, and has spent nearly a year of her life in intensive care units.
Her second open-heart surgery was the Yasui procedure, a complex and relatively new surgical approach. We are deeply grateful for the extraordinary care and thoughtfulness of her heart surgeon, who spent countless hours carefully planning and ensuring that every decision was made with Ailyn’s long-term wellbeing in mind. His dedication gave our daughter a chance at life that we will never take for granted.
Her rare genetic condition has brought countless additional medical challenges, including severe developmental delays, cognitive disability, epilepsy, chronic aspiration, feeding difficulties requiring a G-tube, recurrent infections, kidney and gastrointestinal complications, autism characteristics, limited mobility, and profound communication challenges.
Today, Ailyn is unable to walk, speak, or eat by mouth. She cannot tell us when she is hurting, scared, or uncomfortable, making every day a constant exercise in observation, intuition, and advocacy. She is currently awaiting a communication device through the University of Wisconsin, which we hope will one day allow her to express thoughts and needs that have remained locked inside for far too long.
In September 2024, Ailyn began experiencing seizures that would eventually become severe and difficult to control, with a pattern and intensity similar to Lennox-Gastaut Syndrome, a rare and complex form of epilepsy. Despite multiple medications, managing her seizures has remained an ongoing and significant challenge.
In March 2025, she began a medically supervised ketogenic diet in an effort to reduce seizure activity. While the diet has offered some hope, it has also contributed to significant weight loss and a noticeable decline in her overall health.
In October 2025, we nearly lost Ailyn after she developed infective endocarditis—a life-threatening infection of her heart. The illness left her profoundly weak, requiring months of therapy simply to relearn how to hold up her head, sit independently, and use muscles she had previously worked so hard to strengthen.
Although she has made incredible progress, her heart remains critically fragile. She lives with severe leakage of her neo-aortic valve and significant narrowing of her aortic arch, limiting the amount of oxygenated blood her body receives with every heartbeat.
In January 2026, our family began working with palliative care. By May 2026, Ailyn was placed under hospice care.
Choosing hospice wasn’t giving up.
It was choosing comfort, dignity, and making every remaining day as meaningful as possible.
Becoming Ailyn’s caregiver meant learning a new way of living—one defined by hospital rooms, medical terminology, sleepless nights, and constant vigilance. It also meant learning to celebrate the smallest victories: a smile after a hard day, a moment of calm, a brief return of strength, or hearing her laugh.
But our story is not only Ailyn’s story.
While we were fighting to keep Ailyn alive, our oldest child, Aaron, was fighting a battle of his own—one that was often invisible to the outside world, but deeply present within our home.
Aaron struggled with severe mental illness for years. He courageously sought help through inpatient psychiatric hospitals, residential treatment programs, intensive outpatient therapy, partial hospitalization, medication management, and countless safety plans. He fought harder than most people will ever know.
In 2024, Aaron was in a residential mental health treatment center when he began experiencing severe psychosis, including auditory hallucinations and voices commanding him to harm himself. In a moment of crisis, he left the facility and attempted to access a bridge with the intent to end his life. When he was unable to go through with jumping, he experienced a brief moment of clarity and did not proceed.
Shortly after, Aaron was taken into custody. Despite repeated pleas for him to remain on suicide watch and to receive his prescribed medications, he was placed in a general population setting. As his mother, I advocated as urgently as I could—speaking with officers, emailing the detective, and begging for safeguards I feared were not in place.
Aaron had never been in the legal system before. He did not understand how charges were presented, and when he was shown documentation listing potential penalties, he believed it meant an immediate, fixed outcome rather than a maximum sentence. In his fragile mental state, he interpreted this as a life without hope or future.
In that moment of overwhelming fear and confusion, Aaron attempted to take his own life again. He fell from a second-story railing, sustaining a severe traumatic brain injury, including intracerebral and subarachnoid hemorrhaging.
He survived—but his life was forever changed.
And I was his person.
I was the one constant in his life. I took him to appointments, searched endlessly for therapies, looked into support groups, sat with him in the hardest moments, and loved him through every high and every devastating low. I did everything I could to help him feel safe, seen, and not alone.
There were moments of deep pain in that journey—moments that still stay with us. I remember one night at the Ronald McDonald House when Ailyn was in the ICU and I had to be with her. Aaron, overwhelmed and hurting, cried in a closet because I wasn’t physically there with him in that moment. In that moment, I tried to hold both truths at once—that I had to be with Ailyn to keep her alive, and that Aaron needed me just as deeply in a different way. That is the impossible weight of loving a child through medical crisis and mental illness at the same time.
Aaron was not just a patient, or a diagnosis, or a struggle.
He was funny, creative, deeply empathetic, and incredibly loving. He had a gift for making people feel seen. He dreamed of becoming a social worker because he wanted to help people who felt forgotten. He believed in kindness with his whole heart—and he lived it, even in his darkest moments.
In July 2025, after years of fighting, Aaron died by suicide at just twenty years old.
Our world shattered.
And yet, even in that devastation, his life did not lose its meaning.
Aaron’s legacy became the foundation of The Aaron Rogers Foundation and the Be The One movement—a mission built on the belief that one conversation, one moment of kindness, one person choosing to truly see another human being, can change or even save a life.
We also carry the weight of something many families never speak about openly: how deeply broken our mental health and legal systems can be.
There were times when Aaron was in the midst of psychosis—hearing voices, overwhelmed, and actively suicidal—yet instead of being held within treatment, he was placed into a jail environment. Our system, in those moments, did not provide healing. It provided punishment. And it left us asking how many others are being failed in the same way.
Mental health reform is not optional. It is urgent.
But while systems change slowly, we believe individuals can still make a difference right now. We can choose kindness. We can choose patience. We can choose to see people who are struggling instead of turning away.
Because one act of kindness may feel small to one person—but it may be the very thing that saves another.
Our family has also faced profound financial strain. I had to close my business in 2025 because it became impossible to continue working while caring for Ailyn and supporting our family through crisis after crisis. I worked incredibly hard to build that business, and for a time, it allowed us stability, travel, and beautiful memories together as a family.
Losing that income changed everything.
We now live on one income in a state that does not compensate parents for in-home support services, despite the fact that families like ours provide round-the-clock medical care. The financial pressure is real. Our children are aware of it. They are incredibly humble, deeply compassionate, and far more aware of the value of money and stability than any child should ever have to be.
And yet, through it all, they continue to show up with love.
We are also parents to four other incredible children who have endured more in their young lives than most people will ever understand. They have watched their sister fight for every breath, their brother battle mental illness, and their family navigate grief that has no roadmap. And still, they continue to love deeply, care for others, and move through the world with remarkable strength.
Our family is not just broken.
We are also still here.
Still loving.
Still trying.
Still believing that something meaningful can come from even the most painful experiences.
We are not sharing our story for sympathy.
We are sharing it because we believe in change.
We believe in mental health awareness, in suicide prevention, in supporting medically complex children and their caregivers, and in building a world where no one feels invisible in their suffering.
If there is one thing we have learned through all of this, it is that life can change in an instant—and so can a moment of connection.
So if you take anything from our story, let it be this:
Be kind.
Be present.
Be the one who notices.
Be the one who stays.
Because one act of kindness can mean very little to one person—but it may be everything to another.
And sometimes, it may be what saves a life.
Thank you for being here.
Thank you for walking beside our family.
And thank you for choosing to Be The One.