A music teacher from the University of Alberta made the rare of a boy from Edmonton “Bubble boy’s disease “ In the song.
Inspiration and melody come from Jakob Guziak The DNA and the words of her mother and it is a project that the researchers hope to raise awareness of the state of Jakob.
“What he is doing is highlighting these conditions that are not sufficiently supported by the health system,” said UP, Michael Frishkopf music teacher.
In August 2019, when he only had 10 days, Jakob was diagnosed with Aca Scid – or a severe combined immunodeficiency.
It meant He did not have an immune system And in order to protect Jakob, the family lived in a “bubble”, keeping interactions with other extremely limited.
His immune system was so weak, a cold could have killed him.
We did not expect to live his second anniversary and for years, there were members of his family whom he had never met.
Jakob has also started to follow monthly treatments where he received plasma transfusions, giving him about 25% of an immune system.
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To help raise awareness of the state of Jakob, Frishkopf, known for having used automatic learning in music therapy, composed a piece of music based on Jakob’s disease, after being approached by Aditi Kantipuly, doctor and founder of A group called the genetic music collective.
Jakob Guziak in the hospital is treated for his rare “bubble” disease.
With kind permission: Andrea Fernández
Rather than adopting the conventional approach, Frishkopf used sonification, a process that makes data, such as genetic sequences, in sound or music.
DNA is made up of four bases called “Act and G.” Frishkopf converted the ACCI-SCID DNA sequence into notes.
“What I decided to do was interpreted them as intervals on a scale. The scale gives you a kind of musical coherence, ”said Frishkopf.
He took the melody, added the rhythm, then the mother of Jakob Andrea Fernández wrote lyrics.
“It brings me back to Jakob’s time when he was a baby and this really strong force of me.
“A little to ask him to help me survive throughout this process.”
In spring and last summer, The family went to the UCLA in California To participate in a stem cell treatment test.
Jakob, now five years old, has come out of the bubble – go to school for the first time and do things that all the little boys should.
Watch the video at the top of this story for more information.
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