When Aubree was just two weeks old, her family noticed something unusual – small bumps on her skin around her ankles and her wrists. At first, their concerns were dismissed as a skin care issue. But as the symptoms persisted, Aubree’s mother trusted her instincts and continued advocating for answers.
By age two and a half, that persistence led to a life-changing diagnosis.
A visit to a dermatologist confirmed that the bumps were caused by cholesterol deposits, known as xanthomas. Bloodwork revealed Aubree’s LDL cholesterol (LDL-C) levels were in the 900s, leading to the diagnosis of Homozygous Familial Hypercholesterolemia (HoFH) – one of the most severe forms of FH. Genetic testing showed Aubree had inherited two different mutations, making her condition especially serious. What followed wasn’t just Aubree’s diagnosis – it was a family diagnosis. Her older sister Adilynn and her younger brother Dallas inherited their dad’s gene mutation as well. The only sibling without FH is Aubree’s brother Wyatt.
Searching for Answers and a Path Forward
Aubree began oral medications immediately, but her cholesterol levels remained dangerously high. Knowing more had to be done, her family began researching additional treatment options.
That search led them to lipoprotein apheresis, a treatment that removes LDL-C directly from the blood. Despite being told the procedure was invasive and being denied by multiple hospitals because Aubree was too young, her family refused to wait.
“Every day mattered,” her mother recalls. “We knew her heart was being damaged.”
Their persistence brought them to Dr. Patrick Moriarty at the University of Kansas Medical Center. At just five years old, Aubree began her apheresis journey.
Starting Apheresis Treatment
In November 2017, Aubree underwent surgery to have fistula placed, and by May 2018, she received her first apheresis treatment. Since then, she has traveled long distances every other week for care.
The impact was almost immediate.
Before treatment, Aubree was constantly exhausted and struggled to enjoy activities. After starting apheresis, her family saw a dramatic difference – more energy, better sleep, and the ability to simply be a child again.
“Seeing her play at the park made everything worth it,” her mom shares.
Facing Additional Challenges with Strength
In 2021, Aubree began experiencing seizure-like episodes that were initially misdiagnosed. Further evaluation revealed the true cause: a 76% blockage in her aortic root, limiting blood flow to her brain.
At just nine years old, Aubree underwent her first open heart surgery, followed by a second procedure in 2025 when the blockage returned. Both surgeries were major milestones in her journey, requiring strength, resilience, and the support of her care team.
A New Chapter
Today, Aubree is thriving.
Without activity restrictions and LDL-C levels under control, she is looking ahead to her freshman year of high school. She plays volleyball, volunteering to help younger kids learn the sport, and embracing life as a typical teenager.
Her journey, while challenging, has been shaped by determination, advocacy, and the care of dedicated healthcare professionals.
Gratitude and Hope
Aubree’s family credits her doctors and nurses for not only providing expert medical care, but for treating her like family and supporting her through every stage of her journey.
“We are so grateful,” her mother says. “They stood by us during our hardest moments and gave Aubree the chance to live a full life.”
Aubree’s story is a powerful reminder that early diagnosis, persistence, and access to advanced treatments like apheresis can save lives, and give children the chance to truly live them.
