The Austin Children’s Choir is rehearsing for its end-of-year concert inside Hillcrest Church on a Saturday morning. The sanctuary echoes with young voices as the artistic director leads the group through their program.
“We've been really fortunate to have kids from a lot of different backgrounds, a lot of different cultures, and with all varying abilities,” Dawn-Marie Schaefer says. “All of them come here to sing.”
This concert is special. It features the world premiere of Simon Sings, a choral work composed for the choir by Austin composer Nicholas Jimenez. The piece was created after Schaefer applied to work with Sing Me a Story, a Minnesota-based nonprofit that turns children’s original stories into songs.
“Simon is a beautiful 9-year-old boy who has an amazing smile and exudes such positive energy."Alina Gorniak, Simon's mom
“We give kids in need all over the world the chance to write and illustrate stories about whatever they want, and then we give those stories to musicians and songwriters who turn them into songs and send them back to the kids,” says Austin Atteberry, the organization’s founder and executive director.
Simon Sings is based on a story written by Simon and his mother, Alina Gorniak, who live in Austin with Simon’s father, Jeremy Croke.
“Simon is a beautiful 9-year-old boy who has an amazing smile and exudes such positive energy,” Gorniak says. “He's such a bright light, but he was unfortunately born with Sanfilippo Syndrome, and it's a fatal, rare neurodegenerative genetic condition. Kids with this condition unfortunately pass away as children, so they don't make it past the second decade of life. It's likened to Alzheimer's [or] dementia, but in children.”
Autumn Rosado from Sing Me a Story learned about Simon through a news article and reached out. Because of Simon’s neurodegeneration, Gorniak wasn’t sure how he would be able to write a story.
“And [Autumn] said, but can he make choices? And I said, yes, you're right. Yes, he can absolutely make choices,” Gorniak says.
That conversation sparked an idea. Gorniak realized she could help Simon tell his story by offering him structured choices. “I said, Mama's gonna create this like a Mad Libs story.”
Collaborative storytelling
Gorniak created a loose narrative framework from Simon’s perspective that captured the confusion and grief of losing abilities to Sanfilippo Syndrome. Using pictures and simple questions, she helped Simon choose key elements of the story.
“‘OK, what season is it? Is it fall or is it spring?’ And he would pick and I'd say, ‘OK, is it raining or is it nice and sunny?’ And he just kept picking,” she says. “And that was how the story was developed.”
The resulting story is a mystery. Simon’s friends Betsy, Joey and Fox help him discover who is slowly stealing his abilities, like playing basketball, running and singing. The culprit turns out to be a sloth named San Filippo.
When composer Nicholas Jimenez first read Simon’s story, he says, it deeply affected him.
“I think just realizing that I was responsible for ensuring that his story was shown,” he says. “It definitely was a big weight, but it also was very expanding spiritually. It was very, very, profound.”
Jimenez adapted the story using a combination of choral music and spoken dialogue. Four children perform the speaking roles of the narrator, Betsy, Joey and Fox. Schaefer herself plays the sloth.
Schaefer says the kids were immediately drawn to the piece.
“Every week they begged to sing it,” she says. “‘Are we doing Simon Sings? Are we doing Simon Sings?’ They're very excited about having the opportunity to meet him and give this gift to him.”
When choir member Julia Dougherty first heard about Simon’s story, she felt sad for him and his family. It hit home that she’s 9 years old, too.
“And when Ms. Schafer said we can sing this song, I was happy because I like singing and I want to make him feel happy,” she says.
Recognition and celebration
On the day of the concert, the sanctuary is filled with families. Twinkle lights decorate the space. The choir’s pianist, Steve Carlton, gives every child a fist bump as they file in, each wearing black with scarves in orange, yellow or teal. Simon and his parents sit in the front row.
During the first part of the concert, Simon moves around the space, sways to the music and eventually sits on the floor in front of the choir to listen. When Simon Sings begins, he sits on his mother’s lap and watches closely.
As the piece ends, something unexpected happens. Simon stands up and walks into the center aisle as the audience applauds.
“He's giving everyone amazing eye contact, looking around the audience,” Gorniak says. “And eventually you see one adult audience member stand up to give an ovation and then another audience member stands, and soon you have everyone standing and applauding for him and he's clapping and looking at everyone, and it is absolutely an amazing moment.”
Gorniak says people often ask how they can help Simon and their family. She encourages them to donate toward research for a cure for Sanfilippo Syndrome. But she says they also need something else: community.
“It’s isolating having a child with a fatal medical condition,” she says. Also, parents like her don’t often get to see their child publicly celebrated the way Simon was at the concert.
When asked what the moment meant to her as a parent, Gorniak doesn’t hesitate.
“Oh, my mama heart was so full. So full, absolutely,” she says. “I couldn't have been more proud and happy for Simon. Folks had the opportunity to listen, embrace the story, embrace the song, and witness him in all his beautiful glory.”
Gorniak believes that Simon understood he was being appreciated by the choir and audience. The experience convinced her to take him to more Austin Children’s Choir performances because he felt so accepted and celebrated.
“And, I mean, isn't that what all of us want?” she says.
