Liam enjoys trains and building with Legos, and, if he falls asleep … he’ll die.
Liam Derbyshire has Congenital Central Hypoventilation Syndrome, also known as Ondine’s Curse (after a German folktale in which the water sprite Ondine curses her unfaithful lover with death if he ever forgets to be conscious of his breathing). One of the effects of the disease is that if Liam falls asleep, he’ll stop breathing. In fact, he wasn’t supposed to live past 6 weeks old, but this year he turns 18.
Affecting fewer than 1,500 people in the world, this rare condition targets the nervous system, which controls heart rate and breathing, increasing the risk of brain damage. Liam uses a ventilator at night to help him breathe, but even during day, there remains constantly the risk that he will have a seizure or simply get tired.
Liam’s dad says he hasn’t had a peaceful night’s sleep since the day Liam was born, but he says, “Liam is living proof that there’s always hope.”
The family’s spirit of determination is hard to miss. Amidst all the complications that come with Liam’s illness, both Liam and his parents remain steadfast that his life is not a condition, but a gift worth living. They continue to help Liam live as independently as possible and testify that a difficult life is valuable and worthy. “You cannot regret or have any remorse about the life he’s had,” his mom said. “If we had listened to some of the doctors, he shouldn’t even be alive now.”
His dad added, “I don’t regret a day of it.”
You can find out more about Liam and his family, here.
And today we celebrate...