Almost no one has Ondine’s Curse. It is an incredibly rare genetic disorder.
Leo was born one of the unlucky few, and his doctors expected the worst.
“They presented it in such a severe way, like he has no chance for a normal life at all,” his father Tomasz Śliwiński told The Huffington Post. “They said we needed to prepare to give up our professional lives completely, and just focus on the child. They were telling us so many bad things. It’s amazing we didn’t give up in that moment.”
For children like Leo, breathing doesn’t just happen. It is more of a conscious act. If Leo falls asleep, and he is not connected to a large ventilator, he will simply die. During the day, breathing requires concentration. If he’s distracted by something outside his window, or by the television, his breathing may weaken dangerously.
“If he concentrates on something too much, it’s a moment when we have to exercise extreme caution and be ready to plug into the ventilator machine,” Śliwiński said.
Leo in his first year. Photo via Leoblog.
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If you’d like to help, visit the National Organization for Rare Disorders or the CCHS Family Network.
Leo in his third year. Photo via Leoblog.
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