Help Nathanaël communicate at all times

About Nathanaël

Nathanaël is nearly 9 years old and lives in the heart of La Côte. He has a very rare syndrome, FOXG1, which affects around 1,000 known children and adults worldwide. His genetic mutation prevented his brain from fully developing, so Nathanaël cannot sit or walk without assistive devices. He is non-verbal and suffers from epileptic seizures.

His family has always known that Nathanaël understands everything and is fully aware. However, it was only in January 2024 that his speech therapist, using an eye-controlled communication device, revealed that Nathanaël’s intellect is indeed intact and that he even has exceptional abilities. We are just beginning to learn about the knowledge and capabilities this child possesses. But we already know that he can read and calculate faster than any of us.

His courage and resilience through all these years of being misunderstood and without access to appropriate education make us eager to give him a helping hand. How?

Challenge

Nathanaël depends on his assistive devices. He is mainly in a wheelchair or a therapy chair, and sometimes uses a walking aid, the Thomy Walker.

The challenge is to give him access to his communication device at all times (or almost!).

This would allow him to call for help if he feels a seizure coming on. He could alert others if his seatbelt is chafing his neck in the car. He could join the conversation at the dinner table while eating. And he could let those close to him know if he no longer wants to be in his walking device—and much more.

This device (GridPad Tobii) only works within a certain distance and only if it is correctly aligned with his eye position. The mounts provided by the supplier lack flexibility and do not allow Nathanaël to access the device as much as he would need.