Friday, June 29, 2012

Their Curse was truly Our Mighty Miracle

        Ondine!  Thou fair and lovely sprite!  Since first from out an ancient lay I saw gleam forth thy fitful light, how hast thou sung my cares away! ~ Friedrich de la Motte Fouque
Friedrich de la Motte Fouque wrote Ondine, A fairy tale about a water nymph named Ondine who fell in love with a knight named Hans – a mortal man.  Ondine gave up her immortality when she fell in love with Hans, and she bore him a child.  Hans promised Ondine:  “Every waking breath will be atestament to my love."
After losing her immortality Ondine began to age, and Hans became unfaithful.  Ondine cursed him – if ever he fell asleep,Hans’ breath would be taken from him, and he would die.  Eventually, Hans fell asleep from exhaustion, and he breathed no more.
Hans Christian Anderson adapted The Little Mermaid from Fredrich's ‘Ondine’
In 1962, Severinghaus and Mitchell used the term "Ondine's Curse" for patients who developed long periods of apnea during sleep, but who would breath on command.
Ondine's Curse, the disease which afflicts my Mighty Z, is now also known in the medical community as Congenital Central Hypoventilation Syndrome (CCHS) CCHS is a multisystem disorder of the central nervous system where, most dramatically, the automatic control of breathing is absent or impaired.  A CCHS patient’s respiratory response to low blood oxygen saturation (hypoxia) or to CO2 retention (hypercapnia) is sluggish during awake hours, and it is absent to varying degrees during sleep, serious illness, and/or stress.  (See,         
     Irrespective of whether the disorder is called a ‘curse’ or a ‘syndrome’, it is a condition that is hard to accept. But, as one of my beautiful CCHS friends says, "Your curse is my miracle."  Call it what you will, but there is no denying that each one of these children is a Mighty Miracle.                    
Welcome to the CCHS Family Network!
www.cchsnetwork.orgCCHS Network

01 02 03
04 05 06
07 08 11 12

1 comment:

  1. You are a blessing to so many Shelley... whether CCHS or not, you tell it like it is, accept others despite their struggles and views and give support even when we {meaning me} don't even realize we need it!
    Luv Ya