A University of Alberta music professor has turned an Edmonton boy’s rare “bubble boy” disease into song.
The inspiration and melody comes from Jakob Guziak’s DNA and his mother’s lyrics and 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.
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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.
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 …