Our Curse is an Oscar-nominated film (Documentary Short) that, as the NY Times caption puts it, shows a young couples struggle “to overcome every new parent’s worst nightmare: a child born with a life-threatening illness.” The movie was made by Tomasz Śliwiński, who lives in Warsaw, where he is a student at the Warsaw Film School. It is a personal story about the birth of his and his wife’s, Magda, son, Leo. Leo was born with a very rare and incurable disorder known as Ondine’s Curse. Also called Congenital Central Hypoventilation Syndrome (C.C.H.S.), “the disorder prevents the thousand or so people known to have been born with it from breathing while asleep, and sometimes also while awake.”
It is an incredibly moving and triumphant film, one that shows the couple plunged into one of the deepest despairs that life can bring, but who, through the ordeal, come to embrace and love their child fiercely. At times it was difficult to watch the movie. Some scenes are so hard to bear. But that is the life that this young couple has had to bear. And it has born a beautiful little boy and an enduring love. I am not going to say much because I feel that words are so inadequate to describe the movie or this couple’s battle. Or to describe the love they discover.
Perhaps I will include just a few more words, these written by the pediatrician and psychoanalyst Donald Winnicott who writes about the fundamental experience of acceptance for all humans as they come into the world: “As he starts so he must be accepted. So he must be loved. It is a matter of being loved without sanctions.”
I have included a link to the NY Times story and to the film.