Four years ago, my newborn son, Leo, was given a diagnosis of a very rare and incurable disorder known as Ondine’s Curse. Also called Congenital Central Hypoventilation Syndrome (C.C.H.S.), the disorder prevents the thousand or so people known to have been born with it from breathing while asleep, and sometimes also while awake. Though the disorder is manageable when treated, our son is likely to need a ventilator for the rest of his life.
This documentary follows my first few months of parenthood — as my wife, Magda, and I confronted the realities of our new life. 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.
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.
In December, Leo turned 4 years old. He is a cheerful young boy with a wonderful sense of humor, and is doing very well in school. His speech is still a bit delayed, but we’re helping him with it and I’m sure he will overcome this too – because our son is a real fighter.
Watch the trailer of the documentary film about the little Leo.