Meet Charley.

Charley is our wonderful three-year-old daughter who is facing the challenges of Aicardi Syndrome, an extremely rare disorder that causes intellectual/developmental delays and seizures. When she was four months old, Charley began having seizures. 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. Like many three-year-olds, she loves 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 is very social and affectionate. She uses a wheelchair to get around and she also recently started to roll, scoot and “bunny hop” on the floor to move herself from place to place.

Charley’s Courage has four main fundraising goals to improve Charley’s quality of life:

Renovate Charley’s bedroom and bathroom and our home’s front entrance to meet ADA standards
Create a functional play area for her in our yard, including an adaptive swing
Purchase a minivan and adaptive car seat for transportation needs
Procure a Special Tomato seating system to enhance her comfort and functionality within our home

Make An Impact

Charley’s Courage has four goals, please click the links below to learn more. Thank you!

Charley’s bedroom and bathroom need to be made accessible for her wheelchair, so we need to widen doorways, remove carpet, and add a roll-in shower and roll-under sink. We also need to install a Hoyer lift to aid in transferring her to and from her bed and bath as she grows, as well as a split-system HVAC unit for climate control in her room. Additionally, we need to build a ramp to the front door, pave the driveway, and add a whole house generator to ensure her medical equipment can function during a power outage.
We plan to clear a portion of our front yard of trees and brush and add mulch, stone and railroad ties to create space for a swingset that will accommodate an adaptive swing for Charley. Her physical therapist says a swing will help her awareness of her body in space, and her vision specialist says it will help with her depth perception. Plus, she really loves swinging! (You can tell by all the giggles.)
We hope to purchase a hybrid minivan (because we make the 2-hour drive to Boston Children’s a lot) with captain’s chairs in the middle row that can accommodate an adaptive car seat which will allow Charley to face forward. Currently, she is still sitting in a rear-facing car seat because she doesn't have the muscle tone to hold her head up if we turn a traditional seat around. She’s gotten so tall that her knees are folded up almost to her face!
We hope to purchase a Special Tomato seating system for our home to provide extra comfort and support for Charley all over the house. This will expand her access beyond the few rooms where she currently has supportive seating.