Read more about it:
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A short film documenting the intimate thoughts and fears of a couple after
learning that their baby was born with a rare disability is up for an Oscar.
Polish film student Tomasz Śliwiński and his wife Magda Hueckel turned the
camera on themselves when they learned that their son Leo had congenital central
hypoventilation syndrome, also known as Ondine’s Curse. The condition keeps the
boy from breathing while he sleeps and means he will likely face a lifetime of
relying on a ventilator.
“We really felt our life ended at that time,” Śliwiński told TODAY. “We thought we had to
be locked at home with Leo, have no friends, so filming was therapy for us.”
Called “Our Curse,” the documentary follows the couple as they adjust during
their son’s first months of life, coping with an array of medical equipment
needed to keep the boy alive, confronting their own fears and learning to love
Leo.
The footage includes frank conversations between Śliwiński and Hueckel on the
couch in their Warsaw home with Śliwiński going so far as to express his concern
that his son may commit suicide when he’s able to understand his disability.
Now 4, however, Śliwiński told TODAY that Leo is doing well and learning to
speak and the family is moving forward.
“The therapy is over and we have to start living. It was natural we had to
stop shooting this and start enjoying life as fully as we can,” the filmmaker
said.
The 27-minute film is one of five nominated in the documentary short subject
category. The winner will be announced at the Academy Awards on Sunday.
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One notes that the film is titled "Our Curse"; but I think the parents now realize that their son's life is not and will not be a curse. Instead, his life, and theirs, has as much as value as anyone else's life, and it will be a good one.
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