Wednesday, February 18, 2015

AWARENESS WATCH: AN OSCAR-CONTENDING SHORT FILM DEPICTS PARENTS COPING WITH CHILD'S RARE SYNDROME

Read more about it:

********************************

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.

*************************************

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.

No comments:

Post a Comment