(Pictured here with her father, Alan Steventon)

Like most kids, Riley often refuses to eat the food she is offered. But Riley isn’t like most kids. She has Rett syndrome, a rare neurodevelopmental disability that almost exclusively affects girls. She is unable to feed herself and has difficulty chewing and swallowing.

Riley was diagnosed before age 3. In addition to challenges with eating and digestion, her problems with brain function affect her learning, speech, mood, movement, breathing, and cardiac function. Multiple therapists and physicians are continually involved in her care. After years of effort, Riley learned to communicate with a special eye gaze computer system that “reads” what her eyes are focusing on and then verbalizes what she wants to say.

“When people ask us about having other children,” says her mother Jessica, “we tell them that we don’t think about having other children. We don’t have ‘baby fever.’ We have ‘Riley fever.’ Every fiber of who we are is put into her. We just want her to be healthy and happy.”

Read more about Riley in Exceptional Parent Magazine (PDF)




The ability to persevere in the face of fear and difficulty

  • Categories: Faces. Voices. Lives.