CHERUBS latest newsletter issue is out!
Event information, 5 CDH funds, new stories of cherubs, Adopt A Hospital and much, much more!!!
Rene Couret is a plus-size model, actress, entrepreneur and student, currently residing in Southern California. She is studying Musical Theatre and American Sign Language. In her spare time, Rene runs several websites including a CDH birthing options activism site. She also loves giving advice on vegetarian healing diets, whole food nutrition, and self-image issues. Rene has appeared in the movie “Phat Girlz”, appeared in many stage productions and is very involved in Hollywood’s “Love Your Body Day”.
Rene’s son ,Gregory Zion Couret ,was born August 3, 2004 with a Morgagni (or right-sided) Congenital Diaphragmatic Hernia. When Gregory died at six months of age, it was a bittersweet experience. Rene felt it was her greatest source of pain but he was also her greatest source of inspiration.
When Gregory was born he was rushed right away to the NICU. He had a right-sided hernia, which causes more trouble due to the liver piercing into the right lung and pushing over the heart. He was only breathing about 30% on his own and he needed the assistance of a Ventilator in order to keep him alive. He was placed on ECMO for one week and had emergency surgery to fix his diaphragm after a small brain bleed. He had six surgeries and was taken off and on breathing support more than ten times. In the end his lungs just could not handle anymore and his heart gave up on him. My son was supposed to come home right around Thanksgiving in 2004, but he got an infection and had to heal all over again. My family and I prayed hard, stayed up nights visiting him, and had as much faith as we possibly could. He went through ups and downs and fought his best, but by the time he was six months old he passed away. After my Gregory passed away, I felt as if something was wrong with me and I thought I did something wrong. Maybe I could have done more, or maybe it was karma sneaking up to bite me. I went through many ups and downs in my mind before I could just accept what happened and move on. It is still a process and two years later I have days when the thoughts cripple me and there are times where I feel that it never even happened.
Wendy is a celebrity local to the Raleigh – Durham, NC area. I personally met Wendy a few years ago at Duke Gardens and subsequently helped to photograph her wedding (I was a photography assistant at the time). Last year we were looking for volunteers for our Angel Ball and Wendy responded to our ad. She not only volunteered for our Angel Ball but our Golf Tournament as well and is now a celebrity spokesperson for CHERUBS! And if that wasn’t wonderful enough, Wendy, who is also Mrs. Durham County, NC is now using CDH as her pageant platform! We can say we met Wendy at the very beginning of our celebrity career on her way to the top – and on the way to the top Wendy is definitely going!
Some of Wendy’s career achievements so far; Film appearances in “Racing Dreams”; “Absence With Pictures” and “April Fools Day”. She was in Chris Daughtry’s music video “Home”. She has appeared on television on the shows “One Tree Hill”, “Paris Hilton’s BFF” and “Whittaker Bay”. She’s also done quite a bit of local commercials and promotions including playing Diamond Barbie. She is currently on the Nascar circuit as an Ask.com spokesperson. She is Mrs. Capitol City 2008 and Mrs. Durham County 2008 and has represented North Carolina and local towns in the Mrs. NC America 2007, Mrs. North Carolina America 2007, Mrs. Granville County 2007 pageants and was a Miss Hawaiian Tropic Final.. With a huge heart, Wendy is very active with many local charities, including Duke’s Children’s Classic.. Wendy will be at our 2009 Angel Ball!
To learn more about Wendy you can visit her site at http://www.wendypetty.com
Adorable cherub Carter’s mom, Kellie, is spearheading a letter campaign to try to get more media attention and awareness for CDH!
She’s asking all CDH families and friends to write to celebrities and politicians and tell them about CDH. She is asking that you use blue envelopes…. I know most of you (quite understandably) steer clear of the turquoise that promotes the CDH awareness trademark but you can use baby blue or another shade! There are envelopes at Staples and Office Max that are blue with clouds on them! 🙂
For more information, you can go visit Kellie’s blog at http://lettersforcdh.blogspot.com
WTG, Kellie!!!! 🙂
The first awareness ribbon or bracelet for CDH was discussed on CHERUBS old listservs in 2004. Because all the colors are taken, we didn’t want to impede on any other cause’s ribbon or their awareness efforts. Besides, we widely used the “cherub” as our awareness symbol for CDH. We tossed the idea around and talked about it with CHERUBS members but there was no real desire to join in on the awareness ribbon bandwagon.
The very first awareness ribbon for Congenital Diaphragmatic Hernia was a turquoise ribbon created in memory of Drew Lewallen in May, 2006 and posted on Rainbow of Hope. Many of us feel that this is Drew’s ribbon – and it is. Permission to use this ribbon on a larger scale for fundraising for 1 organization only and ownership of this ribbon was never given and copyrights belong to Drew’s family.
Because of awareness issues now associated with another organization’s co-opting of Drew’s ribbon and trying to trademark it (twice), most families refrain from using the turquoise ribbon. Most families affected by Congenital Diaphragmatic Hernia view wearing turquoise or a turquoise ribbon as endorsing the trademark and helping to fund and encourage a corporation’s bid to profit off their babies’ pain and suffering and control awareness of this devastating birth defect. Many families do not want to be walking, talking billboards for something that they find morally and ethically wrong.
The Congenital Diaphragmatic Hernia community needed an awareness symbol that was free, not tainted with any ulterior motives, owned by no one and chosen by CDH families. We also wanted something that belonged to just the CDH community and not several other causes. The turquoise ribbon happens to also be used by many organizations and the public for Addiction Recovery, Lymphedema, Native American Reparations, Sexual Assault, Ovarian Cancer, Anxiety Disorders and more.
We are nothing if not original at CHERUBS and ethically, we could not have used a ribbon color that belonged to another cause or was copywritten by Drew’s family. Besides, these CDH babies are so special that they deserve an original awareness ribbon all their own – so we came up with several ideas for an original awareness ribbon.
Members of several organizations voted for many days and a decision was made. The official congenital diaphragmatic hernia awareness ribbon, as voted on by CDH parents and survivors, is baby blue, pink and pale yellow with clouds.
This is the Congenital Diaphragmatic Hernia Awareness Ribbon recognized by the members of the Alliance of Congenital Diaphragmatic Diaphragmatic Hernia Organizations. Is it recognized by CHERUBS, the world’s first and largest CDH organization with over 2800 members in 38 countries. It is the ribbon associated with the Congenital Diaphragmatic Hernia Research Study.
Wikipedia recognizes this ribbon. There is even a postage stamp with this ribbon, created February 12, 2008. Not to mention 1000’s of items with this ribbon available on our stores and various other sites.
And now, there are personalized Congenital Diaphragmatic Hernia Awareness Ribbons:
Some parents are even wearing their CDH ribbons as permanent tattoos:
We are putting together a project about the Official Congenital Diaphragmatic Hernia Awareness Ribbon and would love to use your photos. Please send in photos related to this ribbon, whether it’s you wearing a hat with the ribbon, or your tattoo or standing beside your car magnet or beside your cherub’s NICU bed with a ribbon posted beside it. Please send them to email@example.com
We are also putting together a list of all the web sites that post this ribbon. If your web site is posting this ribbon please comment to this blog post with the URL to your site.
And feel free to comment and tell us how you are using this ribbon!
Starring over 300 CDH families in the fight against the trademark on “Congenital Diaphragmatic Hernia Awareness” filed by Breath of Hope, Incorporated.
Just a few of the “I Own Congenital Diaphragmatic Hernia Awareness” – videos by families, friends and medical care providers fighting the trademark on “Congenital Diaphragmatic Hernia Awareness” by Breath of Hope, Inc. http://www.ipetitions.com/petition/cdhawareness
To participate e-mail your video file to firstname.lastname@example.org with your cherub’s name and info and the name(s) of those in the video. The script is “I (or we) Own Congenital Diaphragmatic Hernia Awareness”