The Story of Esmé's Stories

Wish mom Hillary said her daughter Esmé’s Make-A-Wish Northeast New York wish is a story of patience, of waiting until her non-verbal daughter could communicate what she truly wanted.

When the now-11-year-old expressed that for her wish she wanted to be the subject of a museum exhibit — and that exhibit would result in her writings being displayed in sculpture, song and even cake art at The Arts Center of the Capital Region in Troy — it was clear the wish four years in the making was worth the wait.

“When we started Esmé’s wish journey, her communication with her talker was still very limited, and it was incredibly important that Esmé be given the time and opportunity to articulate her wish,” wish mom Hillary said. “When she wished for an ‘Esmé Museum,’ it was the first time Ez used communication to share a creative vision of how she wanted something to be, and from there, with the support of her communication team, her creativity exploded.

“Esmé has a lot to teach this world about magic, love, jokes and fun – and why we must always presume the competency of individuals who communicate differently and support them in finding their own voices!"

In November 2022, Make-A-Wish America bestowed the chapter and Esmé's wish its Wish Innovation Award, the national foundation's highest award for wishes. The award honors “chapters that have used exceptional creativity, imagination and innovation to fulfill the one true wish of a child.”

“Esmé’s Stories: A Magical Journey” drew its inspiration from autobiographical tales sprinkled with fantasy penned by the Troy pre-teen.

Born with intractable epilepsy and a genetic gene mutation that impact her ability to speak, walk and eat, Esmé uses eye gaze technology to write her stories. Her short stories start out recounting her true adventures — going on a surfboard and dogsledding, for example — then take wondrous turns.

The exhibit, curated by Belinda Colon, the center’s curator of exhibitions and public art, was a first-of-its kind for both the chapter and the Arts Center. Not only did it include sculpture and an ornate cake made by The Sagamore, but also a new song, “Esmé’s Secret Recipe,” recorded by Jocelyn and Chris.

The duo debuted the single live at The Arts Center on the day originally slated to be a celebration of the wish. Since Esmé was hospitalized at the time in Boston, the performance was livestreamed to her. (The celebration was rescheduled to the last day of the exhibit.)

“I'm honored to present such an inspirational, rewarding and amazing experience to Esmé, her family, friends and our community,” Colon said. “Thank you, Make-A-Wish Northeast New York, for granting wishes."

Make-A-Wish Northeast New York CEO William C. Trigg, III, said Esmé’s wish for an exhibit is both highly unique and representative.

“Wishes, whether they are to go on a trip to Walt Disney World^_® Resort, have a backyard playset, meet a celebrity or any of the other nearly endless options, all have one thing in common: They are driven by a child’s imagination,” Trigg said. “This exhibit, the first of its kind for the chapter, illustrates the beautiful mind of Esmé, and the boundless possibilities a wish can offer.”

Artists Royal Brown, Toast Halasz and Shanelle Carter-Maddox (an Arts Center Board member) were featured in the exhibit, with contributions by artists Jing Agunzo, Isabella Burnett, Cynthia Fiorini and Kim Tateo. Ray Gawlak and Mark McGuire served as the wish granters. The Sagamore Chef Emily Petersen and team provided a catering sponsorship for this wish.