Help Charley thrive with Aicardi Syndrome

We are fundraising to make our home accessible for our daughter Charley, our wonderful three-year-old girl who is facing the challenges of Aicardi Syndrome, an extremely rare disorder that causes intellectual/developmental delays and seizures. Charley started having seizures when she was four months old. After months of tests, in addition to being diagnosed with Aicardi Syndrome, her doctors discovered that she has malformations in her brain as a result of polymicrogyria (or 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.

We believe that Charley’s purpose in the world is to teach people empathy and bring joy to those around her. Our Charley girl has a very chill temperament. 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 is very social and affectionate. She uses a wheelchair to get around and she has also recently started to roll, scoot and “bunny hop” on the floor to move herself from place to place. 2024 has been a particularly difficult year. Charley has been hospitalized 5 times and will have had 3 surgeries by year's end, but she continues to move forward with amazing strength and bravery.

We created Charley’s Courage because we are currently fundraising to meet four main goals:

1. Renovate Charley’s bedroom and bathroom and our home’s front entrance to be accessible and meet ADA standards

2. Create a functional play area for her in our front yard, including an adaptive swing

3. Purchase a minivan and adaptive car seat for transportation needs

4. Procure a Special Tomato seating system to enhance her comfort and functionality within our home

We hope you will consider making a donation as well as sharing this fundraiser with others. Thank you for your time and generosity!