Name: Moje wielkie skejt story odcinek 1 Paulina Pikiewicz Katarzyna Szczerba, Piotr Jeziorko by Fundacja Audionomia
Duration: 46 min 17 s
Description: Odcinek 1 - Tata i córka zanurzona w bogactwie dźwięków opowieść o skomplikowanej relacji trenersko-rodzicielskiej

A link to English translation:

https://we.tl/t-YToUEpvzML

“Ondine’s curse” is a common name for a rare genetic disease officially called congenital central hypoventilation syndrome (CCHS). People suffering from CCHS are at risk of death whenever they fall asleep, although they have not done anything wrong to “deserve” it. No one knows why they are doomed to constant vigilance, particularly after dark. Every night they need a machine to breathe for them while they are asleep. 
One of twelve hundred persons in the world diagnosed with the disease is Leo - the son of a photographer Magda Hueckel and a film director Tomek Śliwiński. They use art to talk about their son’s disease called Ondine’s curse. A few years ago, they made a film and in 2021 they released an extraordinary music album with lullabies, entitled Ondinata. Songs for Ondine.

Kasia Michalak, the author of the feature “Our Lullaby”, visited the family to return to the moments when a double bass player and composer, Sebastian Wypych, had worked on the music for people suffering from Ondine’s curse. Like Jan Sebastian Bach whose Goldberg Variations were to bring an end to the sleeplessness of count Keyserling, Sebastian Wypych creates special music for persons suffering from apnoea and their families. Or perhaps he even tries to propitiate Ondine? 
In his works, the composer incorporates the rhythm of the machines helping the patients breathe every night. It is a haunting sound that one cannot break free from. On the other hand, it is a guarantee that the patient breaths. This very special music serves as a background for stories about rage, sacrifice, and fear. But also about forgiveness and fascination with the Ondine’s myth.

Poland - Documentary - Our Lullaby

Sélection Archives de la Parole

Kasia Michalak, Our Lullaby, 
29’08, Polish Radio – Lublin, Pologne

Ondinata. Songs for Ondine is an extraordinary music project intended to raise public awareness about a very rare genetic disease called the Ondine’s curse (CCHS). Its major symptom is the respiratory failure, mainly during sleep. One of twelve hundred persons in the world diagnosed with the disease is Leo – the son of artists Magda Hueckel and Tomek Śliwiński. One day they came up with an idea to release a record with lullabies.

Kasia Michalak – the author / producer of radio features, she’s  been working in Polish Radio Lublin S.A. since 2001. Organizer of collective listening events. PhD student, co-founder of the Audionomia foundation.

Kasia Michalak_Our Lullaby

rozmowa o audiodokumentach historycznych ich konstrukcji i wykorzystaniu radiowych środków wyrazu

Mariusz Kaminski rozmowa

Odcinek 1 - Tata i córka zanurzona w bogactwie dźwięków opowieść o skomplikowanej relacji trenersko-rodzicielskiej

Moje wielkie skejt story odcinek 1  Paulina Pikiewicz Katarzyna Szczerba, Piotr Jeziorko

https://www.dropbox.com/s/sb9p6b2l42geznx/The%20Pear%20Tree%20Script.pdf?dl=0

Originally aired on CBC Atlantic Voice (Nov. 24, 2020)

Music Credit *Dave Panting*

The Pear Tree

The script (please, download before March 9th)

https://we.tl/t-aFEMcRecST

Moje wielkie skejt story odcinek 1 Paulina Pikiewicz Katarzyna Szczerba, Piotr Jeziorko

Fundacja Audionomia

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