Family's 'Curse' Turns Into an Oscar-Nominated Film
An Oscar-nominated short documentary film, “Our Curse,” is bringing some much-needed awareness to an extremely rare and dangerous children’s disease through the eyes of one family’s heart-wrenching struggle.
Congenital central hypoventilation syndrome (CCHS) is also known as Ondine’s Curse, which impairs the automatic impulse to breathe. As a result, those affected must be ventilated and have their breathing monitored — at least while they sleep, and, at most, 24/7. And as a result, the fear — and risk — of spontaneous death is high.
STORY: Please Vaccinate Your Healthy Kid — To Keep Mine Safe
“How do you explain to a child that every night he can die?” asks baby Leo’s mother, Magda Hueckel, in the film, which is up for an Academy Award on Sunday Feb. 22. “Because I don’t want him to have psychological issues, because this condition is just so full of fear.”
Leo’s father Tomasz Sliwinski, a film student, explained recently in a New York Times essay that he and his wife turned the camera on themselves — when their now 4-year-old was a newborn — as a way to cope with the shocking diagnosis, of which there are only around 1,000 known cases worldwide.
STORY: A Woman’s Dire Battle With Hypermesis Gravidarum
“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,” he wrote. “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.”
Magda Hueckel, Tomasz Sliwinskis and baby Leo. Photo by “Our Curse.”
The 28-minute short was made in Poland, where the family lives, and is subtitled to translate the incredible honesty of the couple, who deliver much of their thoughts while slumped on their couch, smoking cigarettes and sipping wine and looking forlorn. “My biggest fear,” says Sliwinski, “is that when he’s more aware he’ll just commit suicide.”
Despite the film’s darkness, parents of those living with CCHS have been thrilled by its existence, according to Mary Vanderlaan, a professor of political science who started the CCHS Family Network in 1989, when her son was born with the disorder and she had no idea where to turn. “We’re so excited — hardly anyone knows about CCHS,” she tells Yahoo Parenting, explaining that the “Our Curse” filmmakers allowed the group to host a screening for about 80 families at the organization’s summer conference.
When Vanderlaan’s son, now 26, was born and diagnosed, she recalls, “We were told there were about 12 other families in the U.S., and we felt isolated.” So she began placing ads in various medical journals, seeking others to connect with, and the network grew slowly. “It was driving me nuts — I had to find the other families and get organized. It’s been my therapy,” she says, adding that her first order of business was to contact the National Organization of Rare Diseases and request that they change the disorder’s name from Ondine’s Curse to the more medical CCHS, which they agreed to do. “It was one of the first things I wanted — we want to be seen as enabled, not cursed.” Today the Family Network has 390 families registered in the U.S., and hundreds more from around the world, all in search of education, support, and reassurance.
“It’s a lifestyle,” Vanderlaan explains, of learning to deal with ventilators and monitors and phrenic nerve pacers, which provide ventilation support through surgically implanted receivers. Its latest focus is on fundraising with an eye towards research — which found, in 2003, that CCHS is caused by a genetic mutation called PHOX 2B. The disorder itself, she says, can come in various levels of seriousness, with some kids having added complications such as heart problems and Hirschsprung’s disease, a bowel disorder. And while some kids eventually only need ventilating while they sleep, some need it round-the-clock for their entire lives. But with proper monitoring and care, Vanderlaan says, it’s very possible to have a good quality of life and a normal life span.
“My son has a good quality of life, but he’s worked very hard to get there,” she says, noting that he recently completed an AmeriCorps assignment in San Francisco. “They have to be pretty tough kids, and they have to learn to take care of themselves.” That, she adds, can be the hardest part — letting go of the responsibility of monitoring their breathing.
As for Sliwinski, he, too, has come away from parenting through CCHS with a positive outlook. “In December, Leo turned 4 years old,” he wrote in his essay. “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.”
Please follow @YahooParenting on Facebook, Twitter, Instagram, and Pinterest. Have an interesting story to share about your family? E-mail us at YParenting (at) Yahoo.com.
