EDITOR’S NOTE: This story has been updated with a clarification about how the song was made.
A University of Alberta music professor has turned an Edmonton boy’s rare “bubble boy” disease into song.
The inspiration and melody come from his mother’s lyrics and a genetic marker that makes up Jakob Guziak’s DNA.
It’s a project that researchers hope raises awareness of Jakob’s condition.
“What it does do is shine a spotlight on these conditions that are not adequately supported by the health system,” said U of A music professor Michael Frishkopf.
In August 2019, when he was just 10 days old, Jakob was diagnosed with ACA SCID — or severe combined immunodeficiency.
It meant he didn’t have an immune system and in order to protect Jakob, the family lived in a “bubble,” keeping interactions with others extremely limited.
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His immune system was so weak, a cold could have killed him.
He wasn’t expected to live past his second birthday and for years, there were members of his family he never met.
Jakob also started going for monthly treatments where he received plasma transfusions, giving him about 25 per cent of an immune system.
To help raise awareness of Jakob’s condition, Frishkopf, known for using machine learning in music therapy, composed a piece of music based on Jakob’s disease, after he was approached by Aditi Kantipuly, a physician, and founder of a group called the Genetic Music Collective.
Rather than taking the conventional approach, Frishkopf used sonification, a process that renders data, such as genetic sequences, into sound or music.
DNA is made up of four bases known as “A C T and G.” Frishkopf converted the DNA sequence representing ACA-SCID into notes.
“What I decided to do is interpret them as intervals within a scale. The scale gives you some sort of musical consistency,” Frishkopf explained.
He took the melody, added rhythm, and then Jakob’s mom Andrea Fernández wrote lyrics.
“It brings me back to Jakob’s days to when he was a baby and that really strong force of me helping him.
“Kinda asking him to help me survive through this process.”
Last spring and summer, the family went to UCLA in California to take part in a stem cell treatment trial.
Jakob, now five, is out of the bubble — going to school for the first time and doing things all little boys should.
Watch the video at the top of this story for more information.
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