Brandon’s Voice: How a Baystate Health PediPal Team Helped a Young Author Find His Words

Thirteen-year-old Brandon is nonverbal, lives with cerebral palsy and quadriplegia, and thanks to a dedicated Pediatric Palliative Care team at Baystate Health, he recently became a published author.

After years of struggling to secure communication support through school, Brandon received a communication device a year and a half ago. Baystate’s PediPal team including a music therapist, a nurse, social worker, and Certified Child Life Specialist, Nicole Romanelli, visit Brandon a couple times a month at his home. Through games like trivia and “Truth or Dare Uno,” Brandon has steadily expanded his ability to express himself, moving from a yes/no board to typing within different boards on his device.

Nicole sparked the idea for a collaborative book, drawing on Brandon’s love of nature documentaries and memorable zoo trips. Over two and a half months, Brandon and Nicole built a story that wove animal encounters with pieces of his personal journey and backed by careful research to ensure the animal facts were accurate. The action-adventure story invites Brandon to imagine moving through the exciting experiences he loves to read about and see in films. Brandon used his communication device and subtle yes/no signals to help shape every line of the story. For Nicole, it was essential to honor both his interests and his voice—one that is often overlooked simply because he doesn’t speak with words. They celebrated with a home “book launch,” complete with the printed, bound copies and an animal-trivia party for friends, family, and Brandon’s care team. The book was printed through the generous donation from Magic for Maddie.

For Brandon’s mom, Lisa, the impact has been profound. “The PediPal team has been absolutely amazing in their efforts to engage Brandon and get him talking on the device,” she said.

She has watched her son use the communication device to advocate for himself in ways that weren’t possible previously. “He’s advocating for himself very well with it,” she said. “And the device enabled him to accomplish a rare, joyful milestone -- he’s a published author now!”

Today, Brandon uses his device more independently, like any teen browsing YouTube videos, but with Nicole, he’s motivated to share his thoughts and opinions and strive to keep learning. As Lisa reflected on what this experience could mean for other families facing similar challenges, she offered a simple reminder, “It’s important to stay strong and enjoy the wins when you get them.”