1st Annual Hope Floats for 2011 DiGeorge/VCFS/22q Awareness Week

We were extremely honored to be asked to come out and photograph this wonderful event to raise awareness for children with DiGeorge Syndrome!  Hosted by Missing Pieces Parent Support group, children with DiGeorge Syndrome, their parents, and others in the community came out to Panther Creek Park in Owensboro for the free awareness event that included picnics, a bounce house, magician, face painting and a balloon release.  Chicago Cubs pitcher Ryan Dempster's  Family Foundation Awareness tour bus was also part of the  event.  One of the event coordinators, Ashlee Hamby, says, "The Dempster Family Foundation has done an awesome job on raising awareness and helping families with 22q."

I'll be honest -- I didn't know what this syndrome was.  So, I read up on it and talked with Ashlee (whose daughter has DiGeorge Syndrome). I learned that DiGeorge Syndrome (also known 22q and VCFS) is a genetic disorder, caused by defects in the 22nd chromosome, and affects an estimated 1 of every 2000 births.  This results in poor development, and medical problems such as heart defects, poor immune system function, a cleft palate, and more.  Because the number of problems and the severity of each problem associated with DiGeorge Syndrome vary, this can be dangerous for little ones.  And as I learned at this event, 22q is not a rare thing, it's rarely diagnosed due to the vast number of symptoms. To know this, and to see these children being able to be children....well, let's just say it's inspiring how little ones can be so resilient. 
  



Kentucky was the first state to have the proclamation for 22q/DiGeorge Syndrome/VCFS awareness week, which they have had for the past 3 years. Dr. David Watkins, the local state rep in Henderson, helped acquire the proclamation for the state. Since then Colorado has taken Kentucky's lead and now has their own proclamation.



To learn more about DiGeorge Syndrome, and for ways you can help raise awareness, visit the Facebook pages for the Missing Pieces Support Group or the Dempster Family Foundation.