Composer Inspired by Children’s Patient: Part 2


This is the second half of Zoe Colquitt’s story. She was born with congenital central hypoventilation syndrome (CCHS), and although Zoe must use a ventilator 12 hours per day, it doesn’t slow down the 12-year-old known as Mighty Z. Make sure you read Composer Inspired by Children’s Patient: Part 1 to get Zoe’s story from the beginning.

She’s known as Mighty Z because she’s beaten the odds time and again as a child categorized as “medically fragile” battling a disease so rare most people have never heard of it. But she’s also known as Mighty Z because she’s mighty in personality and spirit, which is what prompted local composer Timothy Brown to become a mentor of sorts to Zoe and even compose a song inspired by her.

Composure Timothy Brown with Children's Medical Center patient Zoe Colquitt at the piano.

Timothy Brown composed a song inspired by Mighty Z called Just Believe.

“Her mother told me Zoe was a big fan of mine. The next thing I knew, I was attending a school event, and I gave an impromptu performance,” says Brown. Of course, Teddy Bear, Teddy Bear, Zoe’s favorite composition by Brown, was on the play list.

Brown has kept up with Zoe’s progress as she’s been participating in professionally judged recitals.

“As the years have gone by, I have sent Mr. Brown at Mighty Z’s National Piano Guild Audition results, and he has encouraged her on so many levels to continue playing her piano and never to give up,” Shelley Colquitt says of her daughter.

A Song for Mighty Z

A couple of months ago, Brown called Shelley Colquitt and asked for contact information for Zoe’s piano teacher, saying he had a surprise for her.

Composer Timothy Brown’s wife, Mi Won Brown, playing Just Believe.

“I sent him the information and honestly forgot about it because of all the medical stuff we have had to endure lately,” Shelley says. After Zoe’s next piano lesson, Shelley was quickly reminded.

“Mighty Z came skipping to the car with her piano teacher close at hand. Mr. Brown had composed a song for Mighty Z called Just Believe. Can you believe he would do that for Mighty Z?” Shelley says.

Brown explains that witnessing Zoe’s determination and perseverance through countless medical tests and crises was truly inspiring for him.

“Ondine’s Curse”

Ondine’s Curse is more colloquial term for congenital central hypoventilation syndrome (CCHS). The name is derived from a European myth about a water nymph that could only become human if she fell in love with a mortal. However, if the mortal was ever untrue, he was “cursed” to pay for his infidelity by being forced to think of Ondine with each waking breath. Thus, if he fell asleep, he would stop breathing. The legend was adapted by Hans Christian Anderson in the form of a fairy tale, “The Little Mermaid,” and as an animated film by Disney.

Source: U.S National Library of Medicine, National Institutes of Health

“I thought that Zoe was really fighting such a fight that I really wanted to do something for her,” Brown says. “I called her piano teacher and sent it to her to play for Zoe because I knew it was a little advanced for Zoe right now because she’s so young. But I knew she could grow into it.”

Meet Zoe and you’ll understand why Brown was compelled to compose the bright, lilting piece of music that ebbs and flows, almost like breathing. She’ll likely greet you with a charmingly crooked grin and a big hug. Shy at first, soon she’s chatting about video games, pets, ice cream and Broadway.

Zoe has ambitions to someday be on The Great White Way playing in Annie, but not as the iconic redhead. Her ideal role would be Miss Hannigan.

“She’s kinda crazy,” Zoe says of the role of the orphanage manager.

And Zoe is more than “kinda” determined, says her mother, who knows that once her daughter makes up her mind to do something, she’ll do it – like learn to play the piano. So why not play Miss Hannigan on Broadway?

“As long as there’s not an ounce of quit in Zoe, there’s not an ounce of quit in us,” Shelley Colquitt says of her family’s dedication to keep Zoe healthy.

Team Spirit

Shelley credits Children’s Medical Center with helping Zoe thrive and praises the team approach her doctors take to manage her rare condition.

“We’ve been to L.A.; Washington, D.C.; and Philadelphia,” says Shelley. “By far, Children’s Medical Center is the best when it comes to Zoe. They’re always trying to find new research on her condition, and they talk among themselves.”

Shelley recalls a time walking through the hospital and running into three of Zoe’s doctors. Each one stopped her to talk about the optimistic results of a recent test.

From her cardiologist to her endocrinologist to her pulmonologist to her nephrologist, I know they’re all on the same page. That’s so important,” Shelley says.

“When you have a child who is considered medically fragile, it’s expensive, but Children’s has given us something money can’t buy,” adds Shelley. “They’ve helped Zoe to live, and there’s a big difference between surviving and living.”


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One Response to Composer Inspired by Children’s Patient: Part 2

  1. Zone girl 300 January 25, 2014 at 9:29 am #

    I think that it’s beautiful that CCHS kids can take labs in their sleep.

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