Uly Radiates Joy Through Complex Care

Ulysses, or Uly for short, brightens every room he enters. During the holiday season, Uly relishes the opportunity to be with family and enjoy the warm glow of lights. He also enjoys treats like suman, a Filipino dish of sweet rice cooked in coconut milk and wrapped in banana leaves. He celebrates each day like a holiday, despite his health challenges.

Uly first came to Children’s National Hospital at 8 months old for outpatient therapies. When doctors noticed low muscle tone in his core, expert care ultimately led to a rare genetic diagnosis: AP-4-associated heredity spastic paraplegia. This neurodegenerative disorder impacts Uly's nervous system, brain and spinal cord and makes it hard for him to walk independently.

Uly leans on a lot of equipment and care for support. He uses a manual wheelchair, leg braces or a gait trainer to get around comfortably. With limited verbal communication, Uly expresses himself through sign and a tablet. He routinely goes to physical, occupational and speech therapy sessions.

“A huge part of the journey navigating Uly's ultra-rare condition is learning to be his best advocates,” says Christina, Uly’s mom. “Children’s National empowered us to ask the right questions and think about Uly’s needs from his perspective.”

During procedures, his nurses would play his favorite songs and videos or distract him with books and toys. “Children are not just little adults,” says Saku, Uly’s dad. “They require a different kind of patient-centered care. Uly’s care team always goes out of their way to connect with him as a complete and special person.”

No matter what questions tomorrow brings, his family finds comfort in having experts close to home who care deeply about keeping the twinkle in Uly’s eye.