Broadway singers bring teen's musical to life

This blog post is part of IDF’s Stories Project, designed to provide a venue for those living with PI to share their experiences. If you have a story you’d like to share, email us at stories@primaryimmune.org.

One day back in August 2021, Zak Huot sat at his computer anxiously awaiting a Zoom meeting with the cast of a short musical he had written in conjunction with songwriters from Hear Your Song.

One by one, the performers popped

 on the screen and introduced themselves – and Zak, 12 at the time, quickly learned that he’d be working with the original cast members of major Broadway musicals including “The Lion King” and “Dear Evan Hansen.”

His jaw dropped, his eyes widened, and he couldn’t stop smiling.

“That’s awesome!” he yelled in a video taken by his mom to mark the surprise.

Hear Your Song, a non-profit dedicated to empowering children and teens with serious illnesses and complex health issues by collaborative songwriting, contacted Zak last fall about the project.

Staff from Hear Your Song meet virtually with children to talk about ideas for songs. The children write the lyrics, and professionals compose the music, sing the songs, and supply illustrations – except in the case of “The Adventures of Zippy Junior,” Zak’s musical. In his creation, Zak plays the role of Zippy Junior, a little zebra who follows his heart on a big adventure.

Zak, 13, has common variable immunodeficiency (CVID). As a baby, Zak struggled to gain weight, and after a gastroenterologist ruled out digestive problems, an immunologist ran genetic and antibody tests leading to the CVID diagnosis.

“I’ll never forget the day of diagnosis. His immunologist walked into the room and I could tell right away that something was about to change. When you hear that your two-year-old is going to be 

starting treatments that he will need for his whole life,  it’s so overwhelming,” said Heather, Zak’s mom.

When he was 2 years old Zak began treatment with intravenous immune globulin and recently switched to weekly treatments of subcutaneous immune globulin. Today, Zak remains healthy.

“We’ve been incredibly lucky,” said his mom.

A few years ago, Zak learned about Hear Your Song through a summer camp he attended and he collaborated on a song he wrote called “Noodles,” a simple but full-of-fun tune about his love for pasta.

This time around, with his production of “The Adventures of Zippy Junior,” the storyline and lyrics that emerged through the collaboration process proved more sophisticated.

A lover of zebras, Zak writes about a Zebra who lives in Africa, is adopted by someone in the United States, and flies across the ocean to find his new family.

The little Zebra takes the wrong plane, ends up in New York City, wanders into Times Square, and is cast in a Broadway production of “The Lion King.”

Even though a noisy beeper from his GPS gets him kicked out of the show, the little Zebra finds happiness at the end of his journey.

Zak wrote all the lyrics and the storyline himself, said his mom.

“The purpose of the program is to give a voice to the kids and really let them drive this process,” she said.

“Kids, when they are in the midst of living with a serious illness, they struggle to be in control of things. They’re being poked and prodded. For Zak, it was so difficult for him to understand why are the nurses coming, and why are they pinching him with needles?

“It can be difficult for kids to express themselves, and Hear Your Song allows them to do that. They create these incredible works from kids that are truly inspirational.”

“The Adventures of Zippy Junior” features upbeat and memorable songs sung by top Broadway talent, all set around a heartwarming story. A performer himself, Zak had plenty of inspiration for his work.

“At the age of 3 or 4, we watched the movie “Newsies,” and he would dance around the living room and sing, and then we took him to see the musical on Broadway and that was when he was sold on Broadway musicals,” said Heather.

Some of Zak’s roles in school productions and summer theater include Little Simba in “Lion King Jr.,” Pugsley in “The Addams Family,” and Eugene in “Grease.” Zak is currently in his first professional role as an ensemble cast member in “The Little Mermaid” at the Walnut Street Theatre in Philadelphia.

“He embraces every part he gets. If it’s the part of a tree, he’ll be the best tree he can be,” said Heather.

Heather said she and her husband are “overwhelmed with pride and love” at their son’s accomplishments.

“With everything that he’s been through, everyone who has ever met him has said that he brings joy to everyone he meets,” said Heather. “He just shines, and that’s a wonderful joy to others. This is a special gift he has, for sure.”

Heather praised Hear Your Song and the generosity of the cast members who brought Zak’s idea to fruition.

“They were so generous with their time and talent and they did it completely out of the goodness of their hearts,” she said.

For a child who is passionate about performing, the opportunity to see his ideas come to life through professional Broadway talent was an unforgettable experience.

“I was shocked and speechless when I met all of you on Zoom,” said Zak in a video to thank the cast. “It’s always been my dream to be on Broadway and I never thought I’d get to perform with all of you amazing actors. It means so much to me. Thank you all so much. Theater and music make me so happy.”