Breaking Ondine’s curse
In this episode of The Debrief, we take a look at Ondinata, a new musical release which aims to raise awareness of CHS and help a family in need…
A very rare disease commonly known as Ondine’s curse, central hypoventilation syndrome - or CHS - affects just a couple of thousand people globally. Very simply put it is a respiratory disease where people forget to breathe. Which is OK during the day when you’re up and about, but what about when you go to sleep? This is what affects Leo, a kid from Warsaw who has to be hooked up to medical equipment so that he can breathe at night.
While there is no cure for now, Leo’s parents, Magda Hueckel and Tomasz Śliwiński, have decided to take matters into their own hands and have released a CD full of specially written tracks by top names from Poland and abroad, hoping to raise money, awareness of CHS and the possibility to break Ondine’s curse.
Host John Beauchamp speaks to Magda Hueckel about her journey with CHS and Ondinata.
You can find more information about the CD here and the Polish CCHS Foundation here.