In memory of Shane Torrence (1/28/93 - 9/11/99)
A mom on a mission raising awareness of the condition that took my only child at age 6 and a half - Congenital Diaphragmatic Hernia CDH takes the lives of 15,000 children every year and harms 15,000 more.
Will you care?

Sunday, October 24, 2010

Taking this blog in a new direction...

After working non-stop for the past 6 months on CDH related events, fundraisers, etc, I've come to the conclusion that the public just does not care about the critically ill babies born with CDH.  Distant family and friends care somewhat, but not enough to stand up with us.  The general public with no connection to CDH cares even less. About critically ill newborn babies.

But people will chain themselves to trees for protests, march for animals, picket anything they disagree with. But it's so hard to get them to care about these babies?


C said something to me the other week "people don't care because they've never heard of it and since they've never heard of it they dismiss it as a scam instead of a cause". Nice, huh? I think he's right. It's a catch 22... can't raise awareness if they dismiss it as a scam.

Every day, I spend hours on CDH awareness. I know 100's of others do too. We've got to work harder. I hope we can win the Pepsi contest somehow.... all of the projects but especially research and awareness. TV commercials for CDH.... maybe then people might care.

This past week I have given out about 1500 fliers about CDH, the contest and the Masquerade Ball.  Most people are curious about the ball and will glance on the info on CDH and the contest.   They just don't care.

After all.... CDH isn't Autism, it's not Breast Cancer, it's not Spina Bifida or Cystic Fibrosis or Cervical Cancer or anything they've heard of.   And if they haven't heard of it, if it doen't have huge celebrity endorsement, the public doesn't care.

So we have to chance that.   

I look at my son's photos.   I CARE!!!!!!!!!!!!!!!   I look at all the cherub's photos.   I CARE!!!!!!!!!!!!!!!  I am one person.  The 3400 families in CHERUBS are made up of individuals too.  But together.... maybe we can make the world CARE!!!!!

This week, one of Shane's friends, Logan (13 yrs old) had major surgery.   I mean, take out his sternum, scrape around his diaphragm MAJOR surgery.   Shane, Logan and Brandon, all born with CDH, the 3 little cherub mustakeers.  I love those boys.   I can admit I was scared to death about Logan this week.  I got on my knees and prayed for him, I begged Shane to watch over him.   Log beat the odds and came home less than 48 hours after surgey he was doing so well.   Can you say.... MIRACLE????    The rest of the world may not pay much attention but Logan's family and friends care.... I CARE.

Below is a photo taken of me at the hospital with a family saying good-bye their little boy.   Oz... sweet little Oz....  he only got to spend 10 hours here.  His family let me be there to meet him and say good-bye too.   This is the part of my work that I hate.... watching a family suffer so badly and not being able to do anything at all to stop the pain and save their child.  But being there with Oz and Kendrah and Chris....  I promised that little boy, just like I promised my own little boy.... I CARE and I will do whatever I can to raise awareness and research.   Oz's family is doing AMAZING things already in his name.   They CARE, not only about him, but all the babies!

I had no intention of ever sharing this photo.  I didn't even know it was taken until Kendrah sent it to me and I wouldn't share it without knowing Kendrah and Chris would share anything to help raise awareness.   But this is the sad side of what we do.  This is the worst case scenerio.  This is what we try so hard to stop... the deaths of innocent little babies who haven't had a chance to live.

So when I go around the State Fair or downtown Raleigh or at other large events and I hand out fliers and I talk about CDH..... it breaks my heart to have people say "no thanks" to taking a flier.   Why don't they care?

We've had 7 newpaper articles in the past 2 months about our charity.  A radio clip started last week.   A tv interview tomorrow.  Our angel ball committee has plastered banners and signs all over 5 towns and handed out 1000's of fliers.  Some days it feels like we're spinning our wheels but we are accomplishing a lot.  In the media world of updates when Paris Hilton breaks a nail or Lindsay Lohen goes into rehab... maybe we can get the world to notice 15,000 babies dying each year and 15,000 more critically ill.  Somehow, some way... we will.

I hope Shane doesn't mind me high-jacking his blog to raise more awareness.   But we need more CDH awareness and everything I do I do to honor his memory.   I do care and I will keep caring and I will keep screaming and fighting and pushing for research and awarenes.  I owe it to Shane, to Oz, to Logan, to all the cherubs.  We all do.

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