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.
To help raise awareness of a severe immune deficiency called "bubble boy disease," music professor Michael Frishkopf, known for his innovative use of machine learning in music therapy, composed a piece of music based on an Edmonton boy's genetic marker for the disease. (Photo: Supplied)
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.
