Thursday, April 12, 2012

A HUMAN INTEREST STORY: Progeria - The Aging Disease

Progeria is an aging disease which occurs in one of every 4 million births.  Doctors do not know the cause and there is no cure.  Progeria is a genetic disease, but it is not hereditary and can happen without any warning (I wonder can they detect it through amniosynthesis).  The illness is an auto-immune disease.  The children who suffer from this disease age 8 to 10 times faster than normal.  So, at the age of six these children can have the body of a sixty or seventy year-old person.  There are about 90 individuals world-wide who have this disease and there are none who have lived past the age of 14. 
20/20 aired an expose on this subject about a month ago.  My heart went out to these children and their parents and families as Barbara Walters interviewed them.  What struck me the most was the courage, compassion, spunk and sincerity displayed in their spirits.  These children are truly phenomenomal!  Although their bodies are limited, their spirits soar to great heights.  One little girl Barbara interviewed was six and ready to start first grade.  She wanted to ride the school bus to experience a feeling of "normalcy."  Because she was so small and her bones so weak, she had to practice getting on and off the bus before actually doing it for the first day of school.  She nailed it her first time.  While I take for granted that I have the good use of my body - I'm able to walk, run, jump, talk, see, hear, read and play - do just about anything I want to at WILL - the fearlessness and boldness these young, sick children showed gave me a new perspective on life.  I complain a lot less.  A very startling notion I got from watching these brave children is that they DO NOT want pity.  They taught me at a deeper level about compassion, courage and love.  They are thoughtful, charming, gentle, and just wonderful.  Cheers to them!!


  1. I have seen news posts on this disease before and it is heart wrenching. It just goes to prove, .. no matter how sick we are, there is always someone worse off than we are.

  2. I've seen a story on Barbara on TLC. She is truly amazing and so wise. You can't help but feel joy and love for life after hearing that young person. Although her disease is a tragedy there is nothing tragdic about her life.


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