April 19 - Congenital Diaphragmatic Hernia Awareness Daily Celebration

Taken from CHERUBS blog:



April 19 - celebrating Congenital Diaphragmatic Hernia Awareness DAILY

April 19 Congenital Diaphragmatic Hernia Awareness Daily Celebration is about 1 thing - raising awareness for CDH and the babies it affects. ALL are invited to join in. From any group, any hospital, any country! It is owned by no one, restricted by no one, profited by no one. EVERYONE can join in, even if you personally have not been affected by CDH! CDH hurts babies EVERY day of the year!

♥ This is the ONLY non-trademarked day set aside for CDH that ALL CDH families, charities and researchers can participate in!  It is a day set aside to raise CDH Awareness and encourage others to do so every single day. ♥

WHAT DO YOU DO? Just raise CDH Awareness! Be involved as much or as little as you want to be! Wear a shirt, hand out fliers, light a candle, let balloons go, send out an e-mail, wear a ribbon, hold an event, tell at least 1 person what CDH is - just do at least 1 thing to raise CDH Awareness!!!

Every family affected by CDH has their own Congenital Diaphragmatic Hernia Awareness day - the day their child was diagnosed. The day that they became personally aware of CDH. We honor that and we promote CDH Awareness Daily.

In the past year, since CHERUBS and 1000's of CDH families have been able to use the term "Congenital Diaphragmatic Hernia Awareness" freely after winning the fight against the trademark on the phrase on April 19, 2010, we have raised CDH Awareness on an astronomical level.   CHERUBS has been on television, in numerous newpaper articles, several national contests, sold 100's of CDH Awareness items, enabled families to use free awareness graphics to get their own CDH Awareness gear, created over 250 personalized CDH Awareness ribbon graphics, submit the CDH Research Bill to Congressmen and found several co-sponsors, raised awareness at many events and conferences, created dozens of videos, included awareness in the CDH Baby Book, created the Save the Cherubs awareness campaign and even the first billboard.  All of this was made possible because we could use this phrase freely once again.

On the 1 year anniversary of this triumphant accomplishment for our children and the future of CDH Awareness and Research, we will celebrate with balloon releases, candle lighting ceremonies and more to raise more CDH Awareness, honor all children affected by CDH.

After several years of awareness being inhibited, we have a lot of catching up to do!!!!  We are working hard to make 2011 even better than 2010 to raise awareness and help babies affected by Congenital Diaphragmatic Hernia.   Join us, wherever you are, in helping the cherubs!

25 Easy Ways To Participate In the 2011 CDH Awareness Daily Celebration

1. Tell someone about CDH!
2. "Attend" the CDH Awareness Daily Facebook Event Page
3. Share the video above on Facebook, Myspace, Twitter or your blog and tell others whatCDH is
4. Use any of the graphics below on your blog, site or social media and tell others what CDH is
5. Ask others to participate in the CDH Research Bill and sign the petition
6. Use the above graphics as your profile photo on sites
7. Wear a ribbon
8. Wear a CDH Awareness shirt, hat or other item
9. Make a video in honor/memory of your cherub
10. Teach your children the CDH Kid's Song
11. Add a twibbon to your Facebook or Twitter accountRelease balloons
12. Light a candle
13. Decorate a jar and ask a local store / restaurant to let you set it up until Mother's Day to collect money for CDH Research
14. Start a Firstgiving page, ask others to give to CDH Awareness, Research or Support in honor / memory of your cherub
15. Start a Cause page, ask others to give to CDH Awareness, Research or Support in honor / memory of your cherub
16. Take CDH Awareness ribbon cookies or cupcakes to work
17. Participate in the Save the Cherubs campaign by taking photos
18. Put a sign on your car about CDH
19. Contact your local media to share your story
20. Let your cherub or other children wear wings all day to raise awareness
21. Hold an event or fundraiser (car wash, lemonade stand, collect change, work with local restaurant, etc)
22. Create a CDH Awareness blog or site
23. Collect items for the CDH HOPE Totebag Project
24. Donate to a CDH Research facility
25. Adopt a CDH Hospital

Vote to help charities who help sick children!

CHERUBS is part of Vote For Kids' Health in Pepsi Refresh, a group of charities that help sick children!  Please vote and help sick babie and childrens' because EVERY child deserves to live a long and healthy life!

Join us on Facebook!

 

• CHERUBS - $25,000 to Provide financial assistance for hospital travel expenses to families affected by CDH (Congenital Diaphragmatic Hernia), a rare and often deadly birth defect that affects over 60,000 babies every year.  Text 101202 to Pepsi (73774)

• Alternating Hemiplegia of Childhood Foundation - $250,000 to Find a path to the cure for Alternating Hemiplegia of Childhood (AHC).  Text 104112 to Pepsi (73774)

• Bailey Baio Angel Foundation - $50,000 for Expanded Newborn Screening Education & Assist Affected Families. Text 103868 to Pepsi (73774)

• Rockin' Against Leukemia - $50,000 Refresh the Dream - Rockin' Against Leukemia: Find a Cure by 2015!  Text 103906 to Pepsi (73774)
 

• SSBTR - $5,000 to Students Supporting Brain Tumor Research.  Text 102749 to Pepsi (73774) 

• Hearts For Hope - $5,000 to Help children on the Cardiology Wing at Children's Hospital, Boston.  Text 100100 to Pepsi (73774) 

•  Lorraines Canes - $5,000 to Provide custom walking canes to pediatric patients without insurance.  Text 101132 to Pepsi (73774)

 

 

CHERUBS - Provide financial assistance to families affected by CDH.

Goals

• To financially assist families affected by CDH
• To provide gas cards to help with travel expenses
• To provide restaurant gift cards to help with expenses
• To provide grocery gift cards to help with expenses
• To help with airline ticket and lodging costs when needed

 

Overview

The CDH Family Assistance Fund helps families with the expenses incurred traveling for medical care for very high-risk pregnancies and critically ill newborns. Often families have to travel 100's of miles to hospitals that are equipped to handle babies born with Congenital Diaphragmatic Hernia (CDH) and that provide ECMO, a heart and lung bypass machine, if needed. Congenital Diaphragmatic Hernia 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 cause of CDH is not known, but it is as common as Cystic Fibrosis and Spina Bifida. Every 10 minutes a baby is born with CDH - adding up to over half a million babies since 2000.   The hospital stay for a severely affected baby can be as long as 1 year. With the medical bills and emotional stress that these families go through, we want to offer a little help with making travel easier and affordable.

How will the 25K be Used?
Budget Notes: Most pediatric hospitals are affiliated with the Ronald McDonald House, which provides lodging for many of our families. Our request for hotel gift cards are for those traveling long distances overnight to reach a hospital or those rare times when a Ronald McDonald House does not have an empty room.

Though CHERUBS  has just 1 project in this alliance, they have 4 more in this month's contest.   Their goal is to focus on 1 at a time to help the babies with all 5 needed grants so if you have extra votes please vote for one of these projects to help keep them in the top 100 so they will roll over each month.

Click here to vote for all 5 projects at once!

$250k CDH RESEARCH - text message 102542 send to 73774 (pepsi)
$50k Awareness - text 102365 to 73774
$25k Hospital Kits - text 101211 to 73774
$25k Financial Assistance - text 101202 to 73774
$25k Care Packages - text 102123 to 73774

Or click through each one below:

 

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.

Click here to view the full video.

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.

trickortreatforcdh.info

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?

Why?

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!

Photo and video editing at www.OneTrueMedia.com

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