Dawn Kirby’s daughter Kara was diagnosed with FTD at age 29.  In a recent episode of the podcast For Their Thoughts, she shared her experience as a mother fighting for her daughter, her evolution as an FTD advocate and her work with AFTD, and the importance of community support, perspective and education.

The journey to Kara’s diagnosis was anything but straightforward. After the birth of her son in 2017, followed by the tragic loss of her 16-year-old cousin and grandfather within weeks, Kara began exhibiting symptoms that were initially attributed to postpartum depression. “She was caught in the mental illness spectrum, which is understandable,” Kirby explained during the podcast. “One of the doctors called it a perfect storm.”

What followed was a year and a half of mounting concern as Kara’s symptoms escalated beyond typical postpartum challenges. She developed auditory hallucinations, obsessive behaviors, and significant personality changes. Despite spending two and a half months in a perinatal psychiatric unit and seeing multiple doctors, no one suspected dementia in someone so young. “I just kept saying, you’re missing something. This is not my daughter,” Kirby recalled. “I even actually had them check her for a brain tumor.”

An Apology For an FTD Diagnosis

The turning point came when Kara’s psychiatrist in Terre Haute, IN, admitted he had no answers and referred the family to Mayo Clinic in Rochester, Minnesota. Within four days, neurologist Dr. Bove delivered the diagnosis: behavioral variant FTD. “He apologized for giving us that diagnosis,” Kirby said. But she found unexpected relief in finally having an answer. “We’d already been living the nightmare—[the doctor] finally put a name to it.”

Following that diagnosis in February 2019, Kirby and her husband brought Kara home to care for her full-time. The challenges were immense. Kara’s symptoms included constant pacing, compulsive light-switch flipping, and eventually complete loss of speech and mobility. She became doubly incontinent and unable to perform basic self-care tasks. “The challenges were overwhelming,” Kirby acknowledged. Yet she found strength through education and community.

Kirby immersed herself in AFTD resources, joining their private Facebook support group where she connected with other “mama bears” caring for young adult children with FTD. “When you can empathize with someone and you’re on the same journey, you find a lot of comfort in that,” she noted. She also distributed AFTD resources to friends and family to help them understand Kara’s condition, eventually becoming an

Kirby’s dedication to Kara exemplified what For Their Thoughts Foundation calls “Go APE”—Advocate, Prepare, and Engage. She advocated relentlessly for proper diagnoses, prepared herself through education and resources, and engaged with support communities. In 2020, Dawn advocated for and obtained proclamations recognizing World FTD Awareness Week (Sept. 22-29) from Illinois governor J.B. Pritzker and Craig Smith, the mayor of her hometown of Paris, IL.

Kara passed away on New Year’s Day 2023 at age 33, nearly four years after her diagnosis.  Her and her mother’s story continues to inspire and educate others navigating similar journeys, reminding the FTD community that even in the darkest moments, knowledge, connection, and advocacy can light the way forward.

To listen to the full podcast, click here.