News

By Julia Halprin Jackson, managing editor of SJSU Magazine

Carswell and Matthew Ouimet live with Primary Hyperoxaluria Type 1 (PH1), a rare genetic disease that leads to an overproduction of oxalate in the liver, often causing kidney and liver failure. Though their 20-year-old sibling Patrick does not have PH1, he, along with his parents Kristi and Kelly, have dedicated much of their lives to advocating for the treatment, support and welfare of his siblings.

“Their story is very Dungeons & Dragons, high-fantasy inspired,” says Schantz. “They structured it with the disease being represented by a wizard’s curse. I was inspired by ‘Lord of the Rings,’ ‘Game of Thrones,’ high-fantasy music, and tried to give it some whimsy, almost as if you’re telling a bedtime story, with a happy, triumphant ending. My ultimate goal is for them to hear it and be happy with it, maybe hear something new from it.”

The Ouimets, who live in Antioch, California, were paired with Schantz thanks to a unique collaboration with the nonprofit Sing Me a Story, an organization that invites children to work with songwriters on original songs that reflect their own experiences. The pharmaceutical company Novo Nordisk sponsored Sing Me a Story to work with the Ouimet family, who have advocated for people with PH1 through organizations like the Oxalosis Hyperoxaluria Foundation.

Sing Me a Story cofounder and executive editor Austin Atteberry, who felt compelled to create the organization after visiting children’s hospitals to sing and interact with children, says that this musical collaboration with the SJSU Wind Ensemble offers a mutually beneficial opportunity for students, composers and music-lovers alike. While many of Sing Me a Story’s earlier compositions were created and shared with individual families, “The Curse, The Crown, the Crimson Sky” is different in that the Ouimet family got to see their story performed live by an entire ensemble, with their family, friends and medical community in attendance.

David Vickerman, professor of music and director of bands at SJSU, says that he receives dozens of requests from composers and musicians to have SJSU students perform their work — which is why the premise of Sing Me a Story felt so unique. The opportunity represented a rare chance for him to select his own composer — Schantz came to mind as a talented former student — while supporting a worthy cause. Because Novo Nordisk was underwriting the project, the collaboration was a no-brainer. Novo Nordisk manufactures one of the drugs that Carswell takes to manage PH1, and the company plans to show a short documentary of the Ouimets’ Sing Me a Story experience at an upcoming conference.

“When I read the story that the kids wrote, I thought, ‘Oh, this is awesome,’” says Vickerman. “This entire project hinges on Alec’s incredible composition. They are a San José alum who is crushing it not only as a teacher, but as a composer. That’s part of what makes this project so incredibly special for me.”