The Short of It
What would you do if your baby was born with a potentially fatal disability? I would want to hide away, spend every single moment immersed in the pain and savor every precious moment with my child. But two parents, Tomasz Śliwiński and his wife, Magda Hueckel, decided to share their story.
When Tomasz, a Polish film student, and Magda learned that their son Leo had been born with a rare condition called congenital central hypoventilation syndrome (CCHS) or Ondine's Curse, which is a condition that causes Leo to stop breathing when he sleeps, they turned to the camera. Now, their 30-minute short film "Our Curse" has been nominated for an Academy Award.
"We really felt our life ended at that time. We thought we had to be locked at home with Leo, have no friends, so filming was therapy for us," Tomasz told Today.com.
We breathe without thinking, but Ondine's Curse requires Leo to actually remember to breathe. It works while he's awake, but when he falls asleep, he requires respiratory assistance. Patients like Leo are given a tracheostomy and ventilator, a mask or sometimes a diaphragm pacemaker. Leo will need to be monitored for his entire life because any oxygen deprivation due to mechanical failure, clogged tubes or a slipped mask can result in brain damage or death.
"Our Curse" addresses the realities of Leo's medical disability. Tomasz and Magda are brutally honest and don't censor themselves when they talk about their fears and feelings of guilt. The movie is something that all parents can relate to because there's no greater feeling of helplessness than of a parent with a sick or disabled child, and there's no greater love than between a parent and child.
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