Special Needs Now

The Brave, Oscar-Nominated Parents of a Child With a Rare Disorder

our curse documentary about baby with ondine's curse
It's no secret that raising a child with special needs has its highs and lows, and two parents from Poland have captured the raw moments of having a child with an uncommon disorder on film.

Tomasz Śliwiński and his wife, Magda, are the filmmakers behind "Our Curse," an Oscar-nominated documentary short that follows their son, Leo's, first-year struggles with a rare respiratory condition called congenital central hypoventilation syndrome (CCHS).

The film's title references what CCHS is commonly known as, Ondine's Curse, a name that's rooted in Greek myth. CCHS affects 1 in 200,000 newborns and is a result of a genetic defect that causes the central nervous system to shut down and stop breathing temporarily, especially during sleep. Long-term decreased oxygen to the brain can cause irreversible brain damage.

In order to regulate his breathing, Leo has a tracheotomy attached to a ventilator, which he has to wear while he's sleeping. In one of many raw moments, the documentary captures the parents changing Leo's tracheotomy tube while he struggles to breathe.

The parents filmed their story as a form of therapy, and were brave enough NOT to shy away from sharing their real thoughts and feelings. "We didn't put any censorship on ourselves," Śliwiński shared with TODAY Parents. "If we're going to tell this story we want to be honest with the way it happened. I don't feel any embarrassment; these are human emotions and these are things people really appreciate."

Patients diagnosed with CCHS are able to have a long and active life, though with continued respiratory support. Leo is now 4 years old, and though his breathing struggles will always continue, he is living a normal, happy life, as chronicled on his parents' blog, LeoBlog.

Although Leo's parents were initially crushed and burdened by his diagnosis and disability, the therapeutic process of making the film has changed their outlook. "Children who are disabled from the beginning are on a different level — [the film is] an expression of my inner fears and how I'd respond to the situation, it's not how Leo will. I'm sure he'll be a strong guy," ÅšliwiÅ„ski says.

Sherry Huang is a Features Editor for Parents.com. She loves collecting children's picture books and has an undeniable love for cookies of all kinds. Her spirit animal would be Beyoncé Pad Thai. Follow her on Twitter @sherendipitea

 

Screenshot of baby Leo with his tracheotomy-ventilator system from the "Our Curse" trailer