Charley’s Journey

When she was four months old, Charley began having seizures. After months of tests, Charley was diagnosed with Aicardi Syndrome. During the tests, her doctors also discovered that she has malformations in her brain as a result of polymicrogyria (PMG), a condition that creates extra folds in her brain, causing electrical storms that lead to frequent seizures. She also has malformations in her eyes and is legally blind. In December 2024, she had successful brain surgery to decrease the severity of her seizures. She is continuing to recover and deal with side effects from the surgery, but has made big improvements. However, she has continued to have seizures and is trying a variety of medications to attempt to manage their severity.

Charley’s family believes that her purpose in the world is to teach people empathy and to bring joy to those around her. She loves books, Bluey, Moana, and her big brother. She is nonverbal and expresses herself primarily through facial expressions – she is a very happy kid, so you will most often see her grinning from ear to ear. She loves music and musical instruments and is very social and affectionate. She uses a wheelchair to get around and is relearning a lot of her former skills since her development regressed quite a bit following her brain surgery.

As Charley grows, so do her medical and accessibility needs. Her family is currently working to create a safe, accessible bedroom and bathroom space that can support her hospital bed, medical equipment, nursing care, and daily routines. This has been an ongoing process for nearly three years. The old bedroom and bathroom were torn out in early 2025 and the space is currently unlivable. Her family has attempted to work with several different contractors and vendors with no success – one company even stole a deposit of several thousand dollars. Right now, Charley is sharing a small bedroom with her older brother and is being bathed in her kitchen sink because her home is not equipped for her needs. Her home also needs a variety of renovations in and around the front door and entry to make it safe for Charley to get in and out of the home. Click here to learn more about Charley’s specific needs.

Charley’s Courage is organizing a community fundraising effort and November 2026 event (buy tickets) to help make these necessary renovations possible. Your support directly helps create a safer, more functional, and more dignified home environment for Charley and her family. Please donate now!