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Thread: Need Quotes for the Media... How has CHERUBS helped you?

  1. #1

    Need Quotes for the Media... How has CHERUBS helped you?

    The marketing company has told me that we will need this for press releases and other media stuff. Can several of you give me short paragraphs (3 or 4 sentences) on CDH and CHERUBS and support. Kind of a "How has CHERUBS helped you?" response to show our help and importance in the CDH community and why awareness and funding is so important! And feel free to add in a photo too!

    Please post them here or e-mail them to events@cherubs-cdh.org

    Thank you!!!
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.

  2. #2
    "No one knows what this experience is like except someone who has really been there, and CHERUBS if just that- People all around the world who have seen the things we have, and felt the way we have, had to make the same decisions that we have. We all share the same goal now. Whether our children survived or not, we all want to see a day when there are more answers and more options."
    Ohio Co-Rep/Indiana Rep Mother to Jeremiah Isaac Deskins 9/21/2007-1/12/2008 Left Sided Agenesis Type CDH. NICU 3 months- Home 22 days. 1 repair- nissen- gtube- wound vac & graft- enlarged liver- kidney reflux due to malformation of kidney valves-narrowed aorta- malformation of right pulmonary vessels and of course- the ever present hypoplastic left lung. http://www.jeremiah-deskins.virtual-memorials.com http://heavenly-angels.org/graphics/...ingmyangel.gif http://lilypie.com/pic/2009/10/29/V8wd.jpghttp://lagf.lilypie.com/tQNem4.png http://lbdm.lilypie.com/ucO7m4.png

  3. #3
    I just emailed mine Dawn. Here is a copy:
    t's difficult enough to have a sick a baby, but to have one sick with something that most of the world has never even heard of, well it is even more devastating. CHERUBS is the one place where you don't have to spend the first ten minutes explaining what your child has. You can for one brief moment be like everyone else on the block. They share and know your struggles and your triumphs. It's a small piece of sanity in an insane illness.
    cdh found at birth. 28 days NICU. Vent 7 days. Repair at 3 days. No ECMO. NG Tube 28 days http://i319.photobucket.com/albums/m...don/0004-1.jpg

  4. #4
    My only wish is that I had found CHERUBS earlier. My son wasnt diagnosed until birth with CDH and after months of struggles I found CHERUBS and joined their family! Yes, it is a family, although each CHERUBS' journey is different, we all have the common bond of the helpless feelings and receive unconditional love and support from one another. THANK GOD FOR CHERUBS!

  5. #5
    My sister found CHERUBS for me right after Faith was diagnosed. I don't know what I would have done without all the love and support from these families around the world. Truly a community of courage, strength, love and understanding.
    Amy Miles Faith Grace Miles Born 3-6-08- she lost her battle with CDH on 4-5-08 due to complications with deficiencies in blood clotting factors- albumin leakage from silo- pnuemothorax- and PPHN. LCDH- stomach- bowels- and liver/gallbladder up and gortex repair http://i304.photobucket.com/albums/n...Gracesmall.jpg www.carepages.com (search for FaithGraceCDH) www.firstgiving.com/faithgracecdh __________________________________________________ _____________ A gift from Heaven due on July 4th- 2009... http://bd.lilypie.com/pABbm5.png <a><img></a>

  6. #6
    Lynne- I love the point of not having to spend 10 minutes in explanation!!!! Dawn shoudl defintily use that line! I find half the time after explaining people are giving me blank stares!!
    Ohio Co-Rep/Indiana Rep Mother to Jeremiah Isaac Deskins 9/21/2007-1/12/2008 Left Sided Agenesis Type CDH. NICU 3 months- Home 22 days. 1 repair- nissen- gtube- wound vac & graft- enlarged liver- kidney reflux due to malformation of kidney valves-narrowed aorta- malformation of right pulmonary vessels and of course- the ever present hypoplastic left lung. http://www.jeremiah-deskins.virtual-memorials.com http://heavenly-angels.org/graphics/...ingmyangel.gif http://lilypie.com/pic/2009/10/29/V8wd.jpghttp://lagf.lilypie.com/tQNem4.png http://lbdm.lilypie.com/ucO7m4.png

  7. #7
    I have found so much support, love, and many friends. I will be forever greatful to everyone at CHERUBS for helping me through the death of my daughter. Words could never describe the love I have in my heart for this organization.
    Mommy to Shannon Elizabeth (01/16/07-01/19/07 LCDH and HLHS) Peanut Shelbe (miscarried 9/23/07 @ 8 weeks- due 4/10/08 ) Gracie Kathleen & Lily Anne (8/28/08 Blessings from their big sisters!) Shannon's Website! [url]www.shannonelizabeth.virtual-memorials.com[/url]

  8. #8
    Thanks Sarah. I do find it difficult to rememeber who knows what Baer has and who does not. People still don't "get it". My own mother did not see me or talk to me until Baer was 7 weeks old. She said last week she was sorry that she did not "understand how sick he was".
    cdh found at birth. 28 days NICU. Vent 7 days. Repair at 3 days. No ECMO. NG Tube 28 days http://i319.photobucket.com/albums/m...don/0004-1.jpg

  9. #9
    CHERUBS is a place CDH families can go and talk about the many issues we deal with on a daily basis.
    It is an extended family--that offers love, support and strength. No matter how CDH has affected each individual member.
    We are a united family and CHERUBS gives you the peace in your heart to know you are not alone on this CDH journey. You have members all around the world that understand CDH.
    We are all in this together.
    Knowing I have members who can help me with each step we take with our daughter Shelby.
    Makes this journey easier.
    Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]

  10. #10
    You all are wonderful, this makes me so proud of our big CHERUBS family here! Thank you!!! I'm going to post some of these in the newsletter too (I know, I know.. it's late again. I'm going to try my hardest to get it done by next week).
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.

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