In 1976, a condition called “bubble boy disease” became famous after a movie called The Boy in the Plastic Bubble aired on American television. Starring John Travolta, the film was accompanied by the song “What Would They Say” by composer Paul Williams.
The script was partly based on the story of David Vetter, a boy from Texas born with severe combined immunodeficiency. Because simple exposure to unfiltered air could risk a fatal infection, he was forced to live in a sterile plastic enclosure. After an unsuccessful bone marrow transplant, Vetter died at age 12.
In 2019, Andrea Fernández and Kamil Guziak gave birth in Edmonton to their son Jakob, only to find that he had the same rare condition (occurring in one in 500,000 newborns worldwide) and might not reach his second birthday. Though he wasn’t required to live in a sterile bubble, he was kept alive with enzyme injections to boost his immune system, costing $13,000 apiece, delivered three times a week.
The only potential cure for the disease — aside from a bone marrow transplant from a sibling, impossible in Jakob’s case because he is an only child — is a groundbreaking therapy developed at UCLA Health in California. The procedure has proved successful in some children in trials, but it stalled before getting approval from the U.S. Food and Drug Administration. It is currently unavailable in Canada.
To help raise awareness of Jakob's condition U of A music professor Michael Frishkopf, known for his innovative approach to using machine learning in sound therapy, decided to compose 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 — as Paul Williams did when he attempted to capture the emotional state of immunodeficiency through lyrics and melody — Frishkopf went in a radically different direction. He used sonification, a process that renders data, such as genetic sequences, into sound or music.
In this case, sonification allowed Frishkopf to explore the adenosine deaminase gene (ADA) , which under certain variations, can cause ADA-SCID (adenosine deaminase-deficient severe combined immunodeficiency), a rare genetic condition affecting the immune system.
Listen to “Jakob's Melody”
“Most people are familiar with the concept of visualization from school — you draw a graph to see how something varies over time,” he says. “But scientists also use sonification to show patterns you wouldn’t catch with visualization.”
One example, he says, is sonification of climate data to hear how temperatures have risen over time.
Kantipuly provided the sequence of the ADA gene, composed of over 32,000 letters, all varying combinations of A (adenine), T (thymine), G (guanine), and C (cytosine), the building blocks of all DNA. He identified the longest repeating substring of 64 letters — call it a motif — and interpreted each letter as a musical interval.
The problem was, translating the genomic data in such literal terms turned out to be monotonous and boring — it just didn’t make musical sense.
“If you stay too close to the literal pole of interpretation, you render the four letters as four notes, chords or rhythms, and you end up with this very monotonous thing,” he says.
The challenge for Frishkopf was striking an effective balance between representing the data and infusing his own creative interpretation. He decided to confine the intervals to a C scale in the Dorian mode, and arrived at a melody within a reasonable range.
“From there it’s just me interpreting,” he says — a little like Paul Williams, but with lyrics provided by Jakob’s mother Andrea and a little flute added for variety.
“If you want to raise awareness about the disease, you want to feel the genomic sequence intuitively and think, ‘Wow, we’re actually hearing the sequence, but there’s enough musical interpretation to be interesting. Otherwise, why would you go to a concert to hear it?”
