Meet Charley.

Charley is a wonderful five-year-old girl who is facing the challenges of Aicardi Syndrome, a rare neurological disorder that has left her unable to walk, legally blind, and dependent on full-time care. Click here to learn more about Charley’s challenges and the joy she brings to her life and those around her.

Charley’s Courage is fundraising for several important goals to improve Charley’s safety and quality of life through modifications to her home and transportation. Please click the links below for more information to learn how you can help.

Make An Impact

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

The bedroom and bathroom on the main level of Charley’s home need to be made accessible for her wheelchair. This involves widening several doorways, creating storage cabinets for her equipment and a nurse’s station in her room, adding soundproofing and new flooring, and adding a roll-in shower and roll-under sink in the bathroom. She also needs a lift to aid in transferring her to and from her bed and bath as she grows.
The front hallway and front entry of Charley’s home need to be modified to accommodate her wheelchair. This will include removing a wall to widen the hallway space, widening an interior doorway, adding a new, wider front door, and building a larger porch with a ramp and a roof to protect Charley from the elements while she waits to be loaded into her transportation.
As Charley grows, she will need to begin using a larger wheelchair. At that point, she will be too large to be transferred into her current car seat, so she will need a Sprinter-style van with a wheelchair lift installed that can accommodate her new, larger chair. This will allow Charley to stay in her wheelchair and avoid unnecessary transferring, which can be dangerous for both her and her caregivers.
Building a garage and paving the driveway will make transferring Charley to and from a vehicle as quick and easy as possible, especially in winter. New England winters are full of ice and snow, especially hard on wheelchair users (and their caregivers)!
Living in a rural, wooded area, Charley’s home frequently loses power due to branches falling on power lines during storms. A whole house generator will ensure that power outages won’t affect Charley’s care by making sure her essential, lifesaving medical equipment continues to function and her food and medications stay refrigerated.
The neighborhood water system where Charley lives is around 50 years old, does not contain fluoride and often has to be flushed, resulting in questionable water quality. Installing a filtration system for the whole house will help ensure that all the water used for Charley’s drinking and medications is as clean as it can be and doesn’t risk causing additional complications with her health.