The Austin Children’s Choir recently held a rehearsal for their year-end concert at Hillcrest Church, where the sanctuary resonated with the vibrant voices of young singers under the guidance of artistic director Dawn-Marie Schaefer.
“We’ve been fortunate to welcome children from diverse backgrounds, cultures, and varying abilities. They all come here to share their love of singing,” Schaefer remarked.
This particular concert was especially significant as it showcased the world premiere of “Simon Sings,” a choral composition crafted for the choir by local composer Nicholas Jimenez. The piece was born from Schaefer’s collaboration with Sing Me a Story, a Minnesota-based nonprofit organization that transforms children’s original narratives into musical compositions.
“We provide children in need around the globe with the opportunity to write and illustrate stories of their choice. These stories are then given to musicians and songwriters who adapt them into songs and return them to the children,” explained Austin Atteberry, the founder and executive director of the organization.
“Simon Sings” draws inspiration from a story authored by Simon and his mother, Alina Gorniak, who reside in Austin with Simon’s father, Jeremy Croke.
“Simon is a beautiful 9-year-old boy with an incredible smile who radiates positivity,” Gorniak shared. “He is a bright light in our lives, but he was born with Sanfilippo Syndrome, a rare and fatal neurodegenerative genetic condition. Tragically, children with this syndrome do not typically survive beyond their teenage years. It’s often compared to Alzheimer’s or dementia, but manifests in children.”
Autumn Rosado from Sing Me a Story discovered Simon’s story through a news article and reached out to the family. Given Simon’s condition, Gorniak was initially uncertain about his ability to create a story.
“Autumn asked if he could make choices, and I realized that he absolutely could,” Gorniak recounted.
This conversation inspired Gorniak to assist Simon in telling his story through structured choices. “I suggested we approach it like a Mad Libs story,” she said.
Gorniak developed a loose narrative framework from Simon’s perspective, encapsulating the confusion and sorrow of losing abilities due to Sanfilippo Syndrome. With the aid of pictures and straightforward questions, she guided Simon in selecting essential elements of their story.
“I would ask him, ‘What season is it? Is it fall or spring?’ and he would choose. Then I’d say, ‘Is it raining or sunny?’ and he continued to select,” she explained. “That’s how we built the narrative.”
The collaborative effort yielded a mystery story in which Simon’s friends, Betsy, Joey, and Fox, assist him in uncovering who is gradually stealing his talents, such as playing basketball, running, and singing. The antagonist turns out to be a sloth named San Filippo.
When Nicholas Jimenez first encountered Simon’s story, he was profoundly moved. “Realizing that I was entrusted with conveying his narrative was both a heavy responsibility and a spiritually enriching experience,” he reflected.
Jimenez adapted the tale into a composition that interwove choral music with spoken dialogue, featuring four children in the roles of the narrator, Betsy, Joey, and Fox, while Schaefer took on the role of the sloth.
Schaefer noted that the children were immediately captivated by the piece. “Every week they eagerly asked, ‘Are we doing Simon Sings? Are we doing Simon Sings?’ They were thrilled at the prospect of meeting him and presenting this gift to him,” she shared.
Julia Dougherty, a choir member, expressed her empathy upon learning about Simon’s situation, particularly because she is also 9 years old. “When Ms. Schaefer announced we would sing this song, I felt happy because I love singing and I want to bring joy to him,” she said.
The day of the concert arrived, and families filled the sanctuary adorned with twinkling lights. The choir’s pianist, Steve Carlton, greeted each child with a fist bump as they entered, all dressed in black with colorful scarves. Simon and his parents occupied the front row.
Throughout the first part of the concert, Simon moved about the venue, swaying to the music, eventually settling on the floor in front of the choir for a closer listen. As “Simon Sings” began, he perched on his mother’s lap, attentively observing the performance.
As the piece concluded, an unexpected moment unfolded. Simon rose and walked into the center aisle, captivating the audience with his gaze.
“He was making incredible eye contact with everyone,” Gorniak recalled. “Soon, one adult stood to applaud, followed by another, and before long, the entire audience was on their feet, cheering for him while he clapped along, creating a truly magical moment.”
Gorniak often receives inquiries on how people can support Simon and their family. She encourages them to contribute to research aimed at finding a cure for Sanfilippo Syndrome, but she also emphasizes the necessity of community.
“It can be isolating to have a child with a life-threatening medical condition,” she explained. “Parents like myself rarely see our children celebrated publicly in the way Simon was during the concert.”
When asked what that moment meant to her as a mother, Gorniak did not hesitate. “My heart was overflowing with pride and happiness for Simon. It was a beautiful opportunity for everyone to engage with his story, enjoy the song, and celebrate him in all his glory,” she expressed.
Gorniak believes that Simon sensed the love and appreciation from both the choir and the audience. This experience has inspired her to take him to more Austin Children’s Choir performances, as it made him feel accepted and celebrated.
“Isn’t that what we all desire?” she concluded.
