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?

Monday, October 25, 2010

Angel Ball, CHERUBS, Shane and Me on the news

News 14 Carolina did an interview today about our Masquerading Angels Ball! 

In Depth: Dawn Williamson, Cherubs

An event this weekend will help unmask the cause of a life-threatening condition among children that doesn't get a lot of attention. It's called congenital diaphragmatic hernia or CDH and News 14 Carolina's Tracey Early sits down with Dawn Williamson, the founder and president of the non profit group "Cherubs," to talk about this year's event.

In Depth: Dawn Williamson, Cherubs

Sunday, October 24, 2010

Halloween Pasts....

I was blessed to have had a few Halloween trick-or-treating experiences with Shane. 50% of families of babies born with CDH aren't so lucky. And Shane never got to eat a single piece of candy.  I know that doesn't sound like a big deal to most but candy.... 1 simple, childhood pleasure, something "normal".... he missed out on so much.   CDH took his life and so much more.

Many people are "trick-or-treating for CDH" this year to raise funds to help these babie. Please consider participating.

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.

Chris' Gift To Me

A good friend and a member of CHERUBS made this video about me.  She had me in tears, it is so sweet of her to make.  I am honored that she thinks so highly of me.  Little did she know that the song she chose was a song that I sung to Shane all the time as he was my hero.   It is near and dear to my heart.  She said it "just came to her"... maybe Shane sent a sign through her.  :)    And she didn't know that on the day she made this and sent it to me that that I really needed a sign that I'm following God's path and that my little boy is ok.

Chris Weaver, you're an angel to me in many ways... thank you!

Sunday, October 10, 2010

Angel Ball Baskets in Memory of Shane & Debra

We can't buy them birthday presents or Christmas gifts.... so this is the next best thing.  Buying items they would love and donating them to a good cause.   It felt good to shop for them.   Miss them both so much...

Sesame Street basket donated in memory of my son, Shane, lost in 1999 at age 6 and a half from Congenital Diaphragmatic Hernia.

This basket includes:

Sesame Street 40 Years of Sunny Days DVD
The Adventures of Elmo in Grouchland DVD
15" tall Plush Elmo Doll
Count Von Count 40th Anniversary Plush Doll
Abby Cadabby 40th Anniversary Plush Doll
Ernie 40th Anniversary Plush Doll
Sesame Street Busy Buddies Bubble Magnet Book
Elmo Socks (size 24-36 months)
Oscar the Grouch Socks (size 24-36 months)
Abby Cadabby Socks (size 24-36 months)
Hiking Sesame Street Friends Plastic Holographic Green Bowl & Cup Kid's Dish Set
Abby Cadabby Plastic Holographic Purple Bowl & Cup Kid's Dish Set
Elmo Goes to School Plastic Holographic Red Bowl & Cup Kid's Dish Set
Cookie Monster Figurine
Big Bird Figurine
Elmo Figurine
Sesame Street "Storybook ABC's" Book
Sesame Street "the Five Senses" Book
Sesame Street "S is for School" Book
Sesame Street "My Baby Brother Is A Little Monster" Book
Sesame Street "Way to Go, Zoe!" Book
Sesame Street "Let's Eat!" Book
Sesame Street "Red or Blue, I Like You!" Book
Sesame Street "Abby Cadabby's Rhyme Time" Book
Sesame Street "Love, Elmo" Book
Sesame Street "Watch Out for Banana Peels and Other Important Sesame Saftey Tips" Book
Big Birds First Book of Letters Board Book
Cookie's First Book of Numbers Board Book
Abby's First Book of Shapes Board Book
Sesame Beginnings "Eyes & Nose, Fingers & Toes" Board Book
Sesame Beginnings "At the Zoo" Board Book
Sesame Beginnings "Bubbles, Bubbles" Board Book
"Fun With Friends" Jumbo Coloring & Activity Book
"Animals All Around" Jumbo Coloring & Activity Book
"Outdoors All Day" Jumbo Coloring & Activity Book
"Festive Friends" Jumbo Coloring & Activity Book
"Happy Holidays" Jumbo Coloring & Activity Book
"Let's Pretend" Jumbo Coloring & Activity Book with Stickers
"Rain or Shine" Jumbo Coloring & Activity Book with Stickers
Elmo Red & Big Bird Yellow Trianglur Crayons Set
Cookie Monster Blue & Oscar Green Trianglur Crayons Set
Cookie Monster Figural Stamper Friend
Big Bird Figural Stamper Friend
Elmo Figural Stamper Friend

Disney Basket in memory of my sister, Debra, who died in 2002 at 22 yrs old from Rhabdomyosarcoma, a rare form of bone cancer.


4 1-day Park Hopper Passes donated by Walt Disney Company, Inc.

The remainder of the basket was donated by myself, my husband and my parents.

This basket includes:

4 1-Day Disney Park Hopper Tickets to use at the Magic Kingdom, Epcot, Disney's Hollywood Studios or Animal Kingdom (tickets donated by Walt Disney World Co.)
Mickey Mouse Disney Beanz stuffed doll
Minnie Mouse Disney Beanz stuffed doll
Disney Princess Tea Set
Mickey Mouse Laptop Junior
Mickey Mouse Clubhouse Wireless Microphone
Sleeping Beauty Tiara
Tinkerbell Socks (size 4-6)
101 Dalmations Socks (size 12-18 months)
Mickey Mouse Glow In the Dark Socks (Size 6-8)
Tickerbell Tooth Fairy Pillow
Tigger & Pooh Kaliedoscope
Winnie the Pooh Woodboard Puzzle
Disney Princess Poster Paint Set
Mickey Mouse Clubhouse Numbers & Counting Learning Workbook
Mickey Mouse Clubhouse Alphabet Learning Workbook
101 Dalmations Book
Alice in Wonderland Book
The Lion King Book
Peter Pan Books
Snow White & The Seven Dwarfs Book
Beauty & The Beast Book
Aladdin Book
Snow White and the Seven Dwarfs Board Book
Nemo School Days "Colors" Board Book
Mickey's Trucks Board Book
Farmer Mickey Board Book
Alice in Wonderland "Counting" Board Book
Dumbo "Opposites" Board Book
101 Dalmations "Colors" Board Book
The Little Mermaid Soft Toddler Book
Winnie the Pooh Soft Toddler Book
Winnie the Pooh Figurine
Tigger Figurine