Wednesday, September 15, 2010

CHERUBS & APX Press Conference

photo by Michael Cunningham of APX Alarm

On Monday, September 13th, CHERUBS and APX Alarm held a press conference.   CHERUBS was presented with a $30,000 check by APX Gives Back.   Dawn's speech and these photos say it all...

photo by Michael Cunningham of APX Alarm

11 years ago today I was saying good-bye to my son at a funeral home. Instead of picking out colleges, I got to choose his headstone.  Instead of dressing him up for the prom, I got to choose the clothes he was buried in.  That is something that no parent should ever have to do.  I will never see him grow up, fall in love, get married, have a career or become a dad.  That is something no child should be robbed of.  But Congenital Diaphragmatic Hernia did that.  It took his life and it takes the lives of over 30,000 babies every year. 

Congenital Diaphragmatic Hernia (CDH) occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth.  50% of babies born with CDH do not survive, the other 50% that do make it often endure long hospitalizations and many major surgeries. 

Congenital Diaphragmatic Hernia is not a rare birth defect.  It is as common as Spina Bifida and Cystic Fibrosis.  Annually in the United States, more people are victims to CDH than lightening strikes, tornados, hurricanes, earthquakes and floods combined.  Every 10 minutes a baby is born with CDH, every 20 minutes a family is devastated as they say good-bye to their cherubs.  In the past 10 years, over 600,000 babies have been born worldwide with CDH.  It has taken the lives of over a quarter million babies since 2000.  Yet there is little research and even less awareness.

CHERUBS was founded in 1995, right here in the Triangle. We've spent the past 15 years trying to raise awareness of Congenital Diaphragmatic Hernia.  We have screamed, begged and pleaded with the world to pay attention to these babies.  We've built sites, blogs, we've invested years in sharing our stories and photos of our children.  Without awareness, there are no research funds.  It's heartbreaking for us families to watch these babies die and struggle to survive and to feel like the world doesn't care about these children.  Raising CDH Awareness has been a large, hard uphill climb for us.

Until APX Gives Back.  APX gave us a platform to raise awareness on a level we've never been able to before.  We reached 1000's through Facebook, flyers, e-mails and APX's blog and Facebook pages.  Our members, CDH families, did such an incredible job raising votes and awareness.  We collected over 25,000 votes.  We begged, pleaded, drove our family and friends nuts to vote but along the way, a funny thing happened.... people became aware of Congenital Diaphragmatic Hernia.  Strangers from other charities became friends and learned about CDH and voted for us.  Strangers on the street saw a flyer and voted for us.  1000's of people who had never heard of Congenital Diaphragmatic Hernia learned about the contest and voted for us.  We have met so many amazing people and our childrens' stories touched their hearts and they learned about CDH.  

APX did this.  Through their generousity in the APX Gives Back program, they helped us to not only raise awareness but gave us the opportunity to win $30,000.  2 amazing, amazing gifts.  CHERUBS is run strictly by volunteers.  We have no office.  No grant funding.  No sponsors.  We provide services to over 3200 families in 38 countries on a shoestring budget made up of donations, lots of sweat and tears and prayer.  Our annual donations average $30,000.  APX has DOUBLED our annual budget for this year. 

This means that we can now afford to get our research database up because we can hire a programmer to do the work I don't know how to do.  We can get a toll-free number so families can call us without incuring a phone bill.  We can send out newsletters again, update our member forums and supply more care packages to new and expectant families to give them hope at a time of a devastating diagnosis.  APX Gives Back made that all come true.

How do we thank APX for all of this?  There are no words.  But there is gratitude now where there was worry on how we would fund services.  There is pride on the faces of every CHERUBS family in what we worked so hard for all summer and accomplished.  And there is hope for the services and projects we can now offer them.   I know words do not suffice but on behalf of the 1000's of families that you have touched, thank you.

Thank you so much to the amazing people at APX Alarm;  to the employees who donated money to make this contest possible, to Anne Marie who feels like part of our CHERUBS family now, to Tom who was our guardian angel and go to guy during the contest, to Josh for doing such a great job leading such a great group of people and to Todd, for starting it all.   May God bless you all as much as you have blessed our cherubs and our charity.

And thank you to all of our amazing, amazing members who worked so hard all summer long to make this dream come true!!!!!   We have made our children proud!  :)

No comments: