In a recent article in the New York Times, Tomasz Śliwińsk shared about his newborn son, Leo, who was born with a life-threating condition called Congenital Central Hypoventilation Syndrome (C.C.H.S.), also known as Ondine’s curse.
According to John Hopkins Children’s Center, the condition is a neurological disorder characterized by inadequate breathing during sleep and, in more severely affected individuals, also during waking periods. Ondine’s curse is so rare that only 1,000 people in the whole world have been identified with the condition.
Śliwińsk said that he and his wife, Magda, are required to give Leo supervision and care, both day and night. Unfortunately, there are only a few medical centers in the world that specialize in this disease and access to care is extremely expensive.
Śliwińsk wrote the following about his experience with Leo:
“After Leo finally came home from the hospital, with a collection of medical equipment, we worked hard to tame our fears and slowly adapted to our circumstances. Gradually our perception of Leo changed, too: He evolved from a “curse” (a term we took from the disorder’s name), an alien creature with lots of medical noisy equipment, into our truly beloved son, without whom we could no longer function.
That period of our lives was depressing and devastating. But shooting this film helped us a great deal. It kept us going; instead of succumbing to depression, we could direct our energy into something creative. At the time, we were not sure if we were going to show this film to anyone – it felt much too intimate and private. However, after a few months I realized that we had gone through the universal process of coping with any obstacle, even one that seems impossible at first. It was then that I felt that we should share this experience with others. I decided to complete the film.”
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Śliwińsk and his wife created a short film called “Our Curse,” which became an Oscar-nominated documentary. They wanted to share how their experience could turn into something positive. He concluded, “For me, the most important thing in editing this film was to trace our emotions as closely as possible and to present the whole story honestly, as we really experienced it. We wanted to show that that even the worst moments of life can be turned into something positive, provided you do not lose hope. For us, the story of our family is one of overcoming the worst, and ultimately, of being truly grateful for what we have.”
Now, Leo is a healthy and cheerful four year old. Śliwińsk says that their son is a real fighter, and despite delayed speech, is doing very well in school.
Watch their moving documentary below.
