Meet Charley.

Charley is our wonderful five-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 (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 continues to have seizures and will soon need a second brain surgery to address them.

We believe that Charley’s purpose in the world is to teach people empathy and bring joy to those around her. She loves Bluey, reading, 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 first brain surgery.

Charley’s Courage has three 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
Build a garage and pave the driveway so that transferring her into and out of our van is as easy as possible, especially during winter when it gets very snowy and icy

Make An Impact

Please click the links below to learn more about the Charley’s Courage fundraising goals. Thank you!

Charley’s bedroom and bathroom need to be made accessible for her wheelchair, so we need to widen doorways, extend the room to create storage for her equipment, add soundproofing and add a roll-in shower and roll-under sink. We also need a Hoyer lift to aid in transferring her to and from her bed and bath as she grows. Additionally, we need to build a garage so we can get her in and out of our van in the winter, 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 and allow us to roll her into the play area from the driveway. 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 build a garage and pave the driveway to make transferring Charley to and from our van as quick and easy as possible, especially in winter. New England winters are full of ice and snow, especially hard on wheelchair users!
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!
UPDATE Thanks to a very generous gift, we were able to purchase a Toyota Sienna and obtain an adaptive car seat for Charley. She’s much more comfortable and much happier now that she can see everyone in the car.
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.
UPDATE Thanks to a generous targeted gift, Charley now has a Special Tomato!