Woman with rare muscle disease sings to exercise her lungs

“If I can’t sing a certain note or hold it for a long time, I know I might have gotten weaker,” she told CNN.

Degenerative disease affects muscle movement and breathing. Haly was diagnosed at the age of nine months and has never been able to walk. And tasks that were once easy have now become impossible for him.

“When I was young, I could turn the doorknobs, and over time, I couldn’t even raise my hand to even turn a knob.

An outlet through the song

Haly was three years old when her father introduced her to music. Since then, singing and songwriting has served as a healthy outlet for her.

Tabitha Haly (bottom left), pictured here with her parents and sister, was introduced to music by her father, who plays guitar and piano.

“I let all of these emotions go out and I feel so much better.”

Haly is no stranger to success. She graduated summa cum laude from Pace University in 2006 with a bachelor’s degree in computer science and a minor in mathematics and music. Today, she is vice president of JP Morgan Chase.

Singing is not the only way for Haly to manage her neurological condition. She regularly sees occupational therapists and physiotherapists. She works through daily range of motion exercises. And she employs home health aides who help her around the clock. At night, she sleeps on a ventilator. It is a physical and mental ordeal. But the music keeps it going.

A message in every song

Haly released her debut album, “I Wrote Life,” in 2019. Through her lyrics, she shares stories of triumphs and challenges.

“Whenever I feel really down, like I can’t do something, I just start writing and then sing about it.”

She titled her first single “I Am Able”.
Tabitha Haly performs at her album's 2019 New York release party.

“It’s not the first advocacy-related song I’ve written, but it touches me because it’s parallel to that feeling, where I’ve been used to people looking at me on the street or people keep telling me that there is something that I cannot do.

“This song in particular is a reminder that I am capable. I can help someone. I can be someone. I can be generous to someone. And most importantly, I can be loved like anyone else. ‘other.”

Haly, shown here with her band, shines when her album releases in New York in 2019.

Haly advocates for the rights of people with disabilities during her live performances by enlightening her audience on things people with physical challenges face beyond mere mobility issues.

“It can even just be accommodations where people know they have an assistant with them at all times.”

Its main message is about empowerment. She hopes her songs about life, struggles, and inspiration motivate others to pursue what they want in life.

“If you don’t give up, you’ll find that you get there, whatever your goal,” Haly said. “Don’t let anyone make you feel like you can’t.”

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