Today is International Rare Disease Day. There this is the day of PREMIERE of our new project ONDINATA. Songs for Ondine!!!
It is a two disc compilation with songs by outstanding artists from Poland and all over the world, for all who are affected by CCHS— children and adults alike. Most of the pieces were recorded with CCHS patients in mind. They are performed in English, Polish, Ukrainian, French, German, Mandinka, Arabic and Yiddish. One of the artists is Jarboe, iconic american singer and experimental musician, who created a song especially for us!!! And all proceeds from sales will go directly to support research for the cure for Ondine’s curse (CCHS).
The compilation is 2,5 hours long and consists of 28 songs, 19 of them were written especially for us. It is divided into 2 parts:
– PART 1: HUSH-A-BYE – with lullabies
– PART 2: DE PROFUNDIS – with songs more targeted into older audience (but could also function as lullabies)
The whole idea behind the album is to musically describe the night of a parent of a CCHS child – from the moment the child goes to bed, through the sleepless and sometimes terrifying nights, until early morning, when the child wakes up and new hope arrives. Hence, the musical style of the songs varies from traditional soothing lullabies, through folk music and classical songs, to alternative and experimental rock music.
The double CD will be released on March 28th 2021, in beautiful ecopack with special BOOKLET (in polish and english) consisting of:
– an essay about CCHS (“Do you breathe?”) written by very well known polish writer Joanna Bator.
– description of each song from the perspective of a parent CCHS child and what each song means for us
– lyrics to all songs (in polish, english and original language, if different)
– information about CCHS
Music can be purchased on Bandcamp (and also CD in presale):
The album is also available on iTunes, Apple Music, Amazon, Tidal, YouTube Music and Deezer.
All info can be found on our website: