Uly

Uly is 4 years old and lives with a rare neurological condition called AP-4-Associated Hereditary Spastic Paraplegia (AP-4-HSP). He’s nonverbal and experiences increasing spasticity in his legs, but with the right care and support, he’s making meaningful progress every day.

With the help of his care team at Children’s National Hospital, Uly receives ongoing physical, occupational, and speech therapy—both at school and through outpatient services. He’s undergone sleep studies, botox and phenol injections to reduce muscle stiffness, and uses a range of adaptive equipment like AFO braces, a wheelchair, and an activity chair to support movement and independence.

His family says Medicaid has been lifesaving, as it fills critical gaps in coverage, making it possible for Uly to access the therapies, appointments, equipment, and specialist care he needs—care they wouldn’t be able to afford without it.

Uly is happiest listening to music, enjoying books and storytime, and spending time with his sister and their dog, Charlie. He’s curious, engaged, and thriving in his own way.

This year, Uly and his family are joining #TeamCHA at #FAD2025 to speak up for kids with complex needs and tell Congress why #MedicaidMatters to help protect the care and coverage that helps kids like Uly grow, learn, and live fully.