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

[Dawn Torrence Ireland]

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!!!

[sarah.deskins]

"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."

[LynneB]

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.

[PennyCampsey]

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!

[AmyMiles]

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.

[sarah.deskins]

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!!

[KateC]

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.

[LynneB]

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".

[StephanieOlivarez]

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.

[Dawn Torrence Ireland]

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).

[karahess]

You ladies have me crying! You're words are very touching!

[StephanieOlivarez]

Dawn-with all you are doing...if the newsletter is late.
Please don't worry about it.
It is ALWAYS FANTASTIC!!!!!

These words are very touching and it is good we all have each other.

[LynneB]

I don't know it you can use all of this quote but I do not mind it you paraphrase: CHERUBS is important because of the awarness for research. I want to know WHY it was for our babies. Do we not deserve that? Parents with children with cancer or AIDS or Cystic Fybrosis or Spina bifida know what causes it. Parent with children born with CDH don't know why. I don't know why. I know it is not because I live in South Carolina because Shaz lives in Australia. I know it is not because I was 35 when Baer was born because Corin was 23 when Gabe was born. I know it was not because I was married because Tania had a partner in Darryl when Jacob was born. I know it is not because I was having a boy because Stephanie already had three girls when Shelby was born. I know it was not because I worked around chemicals in a engine factory because Amy was a teacher while expecting Faith. I know it was not beacause he was my fourth and I already had 3 perfect healthy children because Shannon was Kate's first and Jeremiah was Sarah's first. I know it was not because I had teenager's at home to help out with a sick baby because Kara had a toddler when she had Adam. I know it was not because it was 2007 and there wereso many pollutants in the air because Dawn had Shane in 1993. I know it was not because I did not have top notch prenatal care because Judi was in the military when Christopher was born. I know that it was not because I am not a christian because Penny prays to God everyday yet Cole was still born with CDH. I know that it is not because I am white because Juan Pablo and Fer are hispanic. I know that it is not because I am overweight because Danielle is and was thin when Alyssa was born. So now I know so many reasons why NOT, yet I and all the other CDH parents are still looking for WHY our babies where born with CHD. Until we have that answer we cannot begin to hope for a solution. This is why I think that CHERUBS is so important.

[PennyCampsey]

LYNNE !!
this post was great !!
(thank you for including me

[PennyCampsey]

LYNNE !!
this post was great !!
(thank you for including me

[PennyCampsey]

ooppp sorry about posting that one 2 times

[LynneB]

I hope this will touch all who read it. We have all been told what did not cause our child's CDH, but never what did cause it.

[PennyCampsey]

WEll Lynne, you hit the nail on the head, no matter what area of the world, what size, race, social status, it can affect you. But we dont know WHY !! I bet all of us mothers thought "what did I do wrong, what did I not do" , I often think what if someone famous, a movie star or someone of that status had a child with this, think of the media & what attention it would get. Dont get me wrong, I'm not wishing this on anyone, I guess it's just like anything else, out of sight, out of mind.

[LynneB]

I agree. Won't wish it on anyone, but with all of the autism attention in the media and Jenny McCarthy, I wish there was a celeb spokesperson for CDH. If I ever start playing the lottery and win you better believe that my money is going to CDH research and CHERUBS. In as much as I love you ladies and your beautiful children, I wish we all had never met because that would mean there was no such thing as CDH.

[PennyCampsey]

[B]

i agree about the donation, i wish we could do more!!

[KimberlyRichards]

Five and a half years ago, during my second pregnancy, my child was
diagnosed with a Congenital Diaphragmatic Hernia (CDH). All I was told by my OB was that there was a hole in her diaphragm and that she would need surgery. I went home and searched congenital diaphragmatic hernia and I found CHERUBS. Almost everything I learned about CDH was due to CHERUBS. Through their website and their information packet
I recieved in the mail. This information gave me guidance as to what to ask the doctors at and what I need to know about CDH.
There also is a need for research. The fact that the medical community does not know what causes CDH shows there is a definite need for more research.

[FernandaArce]

CHERUBS is my new family, is the place I can go to cry or share or ask for prayers and there is always someone listening. CHERUBS is a place full of love, support and understanding. In CHERUBS I know I'm not alone and that my friends (because I have found so many wonderful friends) will always care for me and my family.

[KimberlySwitzer]

When my son was diagnosed with CDH,during my pregnancy, I thought it was something simple that could be fixed with surgery once he was born. When he died I was so lost and alone, nobody really understood what CDH was even after I explained it over and over to them. Then I found CHERUBS and immediately I felt at home, everyone is there for me whenever I need them and most importantly I know I am not alone on my own journey of CDH, which makes all the difference!

[CarrieCrum]

I thought when Colton was first diagnosed it was a one time thing. He's fixed and we were sent on our way. I went to our follow up thinking this is a waste of money. (not that I wouldn't of gone). But then the Dr, came in and said he had bad news. I was so confussed. I immediatly went home a started doing research. And I found my new friends and now I have a better understanding of what is happening. Not all the answers I was looking for. But I do understand it's not my fault. and Thank you for that.

[Damon andSharonknott]

Lynne,

Brilliant post......... clap, clap, clap

Pen - love the new avator....

[DanielleGolding]

Kimberly R - that photo is so gorgeous! I really love it!

[PennyCampsey]

thanks shaz :) that was at the lake wednesday cole is a swimming freak ! loves it

[FernandaArce]

And yes, Lynne, that was a great post. thanks for including us too.

[LynneB]

I am so glad that you all did not mind me including you in it. I wish I could have included everyone. I hope everyone check's it out especially those who were menitoned and let's me know what they think and if they approve. I love you guys so much!

[StephanieOlivarez]

Lynne-your post was WONDERFUL!!!!
With all of us feeling SO strong about CHERUBS and ALL of us spreading CDH Awareness--we can do nothing but get the Awareness out there and with Awareness--means MORE Research.
If we all bond together to keep spreading CDH Awareness--it will get into the public eye and we will stand strong for all we stand for.

Penny-love the new avatar.
Kimberly--I love your new avatar also!!!


Together we can accomplish GREAT things!

[PennyCampsey]

Thanks Steph!
I actually had some other people read your post too, Lynne, family members, all were very touched and said how "real" it was ! thank you again for posting !

[LynneB]

Thanks Penny! again, please encourage all to read it. I hope to get feed back from those mentioned. I hope they approve. I am not even sure who all has read it!

[AmyMiles]

Thanks for mentioning me! It really drives it home for people. I am sure people who are removed ask themselves, "If she only hadn't..."

[AmyMiles]

Whatever! It can happen to ANYONE! Though it should NEVER happen to anyone.

[PennyCampsey]

i hope everyone reads your post lynne

[Dawn Torrence Ireland]

Lynne, I think it's absolutely wonderful!!!!! I love everyone's!!! Thank you all so very, very much!!!!! Some will be in the newsletter, some on the sites and all of them are going to the marketing company to use where they see fit!!! Please send photos or post them here too if you want those used as well!

[PennyCampsey]

Dawn,can you use the photo of cole that you used on the conference site of contributors ??? do i need to resend it or do you have it, if you post anything of mine, it is %100 fine to use that photo ! thank you

[StephanieOlivarez]

My question is the same as Penny's-
You have a picture of Shelby--do you need me to re-send it to you?

[LynneB]

Dawn, Do you need a picuture of Baer? I have a great one coming in a couple of days if you can wait. I know he is know he is mine but i think you will all fall in love with it!

[PennyCampsey]

how can we all not fall in love with that face !!!!!

[LynneB]

Penny I love ya girl! I can't to meet you and Cole!

[sarah.deskins]

Very good Lynne!!

[PennyCampsey]

I know ... cant wait to squeeze baer .. warn him LOL
can wait to hug you too !!!!!!!!!!!!!
we will all be so funny ,,, the hubbys will be like "oh my gosh what a bunch of crazy women" LOL

[LynneB]

Mine is used to me being crazy! Baer is very cuddley! He loves to be held with his head on your shoulder and be snuggled!

[PennyCampsey]

awwww he's a little snuggle nugget !
cole is shy very shy at first but once he opens up .... oh boy

[LynneB]

I just want to pinch those cheeks! we call Baer a cuddle bum cause he will bum a cuddle off of anybody!

[PennyCampsey]

that's cute!!

[FernandaArce]

Same here, Dawn, do u need a pic of Juanpa? if so, where should I send it?

[Dawn Torrence Ireland]

Please send your pictures to events@cherubs-cdh.org and make sure to tell me it's for your quote... would be super helpful if you could copy your quotes and cherubs' names and date(s) as well in the e-mail so I don't have to go searching for them. :)

Thank you!!!

[PennyCampsey]

Thanks dawn, will send it now