“Except that for him everything is just a beginning”
After culling together home videos documenting the early days of his son Leo Hueckel-Sliwinski‘s life along with brief one-shots of cathartic conversations had between he and wife Magda Hueckel into a seven-minute short three years ago, Tomasz Sliwinski expands their harrowing tale via the half hour long Nasza klatwa [Our Curse]. Aptly named for the affliction suffered by Leo known as Ondine’s Curse (Congenital Central Hypoventilation Syndrome, CCHS), the film takes us on the emotional roller coaster experienced once a young couple is forced to put aside whatever dreams of parenthood they once had for the stark reality confronting them head-on. It shines a light on their fears and challenges while also providing a glimpse at the power of love and mankind’s adaptability to ensure life continues no matter what tragedies are thrown its way.
Leo will never breath on his own while sleeping, his CCHS entailing a need to sleep with a ventilator for the rest of his life through a permanent tracheotomy hole in his neck. It’s unknown whether speech is possible or how his struggle will evolve when he’s old enough to comprehend his state, but at present he has parents sacrificing everything to see he survives to find out. This means constant vigilance at night listening for alarms and sounds emanating out of the machine; a continual presence in case he nods off during the day without anyone knowing; and a wealth of positivity to keep a smile on his face. Tomasz and Magda do it all with one crucial outlet—evenings on the couch to drink, air frustrations, and wrap their heads around their new life.
Our Curse is an uncensored look at the hand fate has dealt them spanning frustrated phone calls to the hospital and insurance company, the lengthy process of packing for trips away, and the act of cleaning Leo’s tube and neck hole while he writhes around within his swaddled cocoon. You can’t imagine what’s going on in this couple’s heads at any moment, thoughts of joy that their son is alive mixed with guilt at wondering whether it might have more humane if he wasn’t. Sliwinski pulls no punches, leaving insecurities and second-guesses onscreen to show exactly what they went through to get where they are today. And out of the nightmare rises a family stronger than ever and ready to face the world. Hope sprung from disaster and love conquering all.