The “Curse” of Rare Disease

Posted Monday February 09, 2015 by Melissa

Our children don’t have to have the same rare disease for parents to relate to one another.

One moment we had a wonderful child… and the next moment, he’ll never be normal again.

That statement from a recent short film sure hit home.

Parents to a child with Congenital Central Hypoventilation Syndrome (C.C.H.S.), also known as Ondine’s Curse, share the experiences of many of us in the 2015 Academy Award nominee for Documentary Short Our Curse.

Checking on your child at night to make sure they’re still alive.

Fumbling with medical supplies.

Holding down your child for medical procedures while they scream.

I remember amidst the raw pain, feeling the same awe as these parents: “He’s so happy in his unawareness.”

If you want to understand the numbness, the fear, the heartache of adjusting to a new life filled with rare disease and special needs, be sure to watch this short film.

** This film contains profanity.

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