July 22, 2010   Cockayne Syndrome , Inspiration

Isabella Theresa!

http://www.firstgiving.com/edwardviljoen Here's what I'm doing to contribute something to the world! How the he...

http://www.firstgiving.com/edwardviljoen

Here's what I'm doing to contribute something to the world! How the heck did I get into this... I'll tell you how... I looked into a baby's eyes... and it was alllll over. Dang, they are irrrrreeeesisitible. So, HELP ME! how? I'll tell you how... donate please.

Everybody falls in love with Isabella Theresa!   It's the eyes I think, or the hair, or... I don't know...It's just her....I fell for Bella at her baptism ceremony.  So when her mom asked me to participate in this fundraiser for the rare genetic disorder Bella has, I knew I would.

At first I couldn't even remember how to pronounce the name of the disorder - and  hardly anyone I know had heard of Cockayne Syndrome (CS)  a rare genetic disorder characterized by poor growth, microcephaly, progeria (premature aging), sensitivity to sunlight, moderate to profound developmental and neurological delays, and a shortened lifespan.  That's what makes it so tender - its easy to minimize the need for support when the disorder is so rare and so few people know about it.  But it's impossible to minimize it when you know someone who has it.

 

 

Because it is so rare, funding for educational programs, exchange of information and support for research is slim.   So we raise funds!! 

 

Visit my fundraising page for more information about the organization:

http://www.firstgiving.com/edwardviljoen

And please forward this to anyone who you think might want to donate too!
Much love,


Edward Viljoen