Thursday, November 18, 2010

Save the Dates - CHERUBS 2011 International CDH Conference



We have already set aside dates from our 2011 CDH Conference - June 23 - 26, 2011 in Orlando - as posted here, on our site and and forums. Please save the date!

This is the world's largest CDH conference with days set aside specifically for Research, Awareness and Support!!!  We have a Parade of CHERUBS, balloon release, Pizza Party, the best CDH experts in the world as guest speakers, research on site and much more.

Our conference is geared towards families - there is no conference fee to attend, we keep the hotel affordable, parking free, hold it near great tourist attractions, only work half days so you can enjoy the sites, provide a kids' room during the conference, we keep it fun and friendly, we keep it confidential and you learn a ton about CDH!   You don't want to miss out!




Saturday, November 13, 2010

No One Knows

(repost from 2008)



No One Knows....
by Dawn Williamson

No one knows what it's like to be diagnosed with Congenital Diaphragmatic Hernia and have your world shatter - unless they have been there themselves.

No one knows what it's like to watch your baby struggle to breathe - unless they have been there themselves.

No one knows what it's like to cry yourself to sleep at night wondering if today was the last day you had with your child and the hospital could call at any minute - unless they have been there themselves.

No one knows what it's like to have to leave the pediatric intensive care unit because you've been there so long that they kick you out - unless they have been there themselves.

No one knows what it's like to sleep on the floor of the ICU waiting room because the Ronald McDonald House is too far way at just 2 blocks from the hospital and you need to be RIGHT THERE in case your child needs you - unless they have been there themselves.

No one knows what it's like to sit in a Care Conference crying for your child's rights, begging staff to not give up on your baby and send him to a chronic care facility - unless they have been there themselves.

No one knows what it's like to have to learn how to work life support systems that your child's very being depends on - a ventilator, an oxygen concentrator, feeding pumps - unless they have been there themselves.

No one knows what it's like to ask yourself "Why my child?" so many times that even God is tired of hearing it - unless they have been there themselves.

No one knows what it's like to have to explain over and over and over and over what your child's medical condition is to family and friends and a society that has never heard of it - unless they have been there themselves.

No one knows what it's like to struggle with marriage issues because you're dealing with reality in different ways and one of you is stuck with making all the decisions while the other lives in la-la-land - unless they have been there themselves.

No one knows what it's like to scream at a nurse that they don't know what they are doing while suctioning your child's ET-tube and it's about to come out and if they don't step away from his bed you will step in and physically remove them - unless they have been there themselves.

No one knows what it's like to have to fight to get treatment for a bedsore on your child's back from being in the same position for 3 weeks - unless they have been there themselves.

No one knows what it's like to actually loudly cheer for a child to pee - just pee - unless they have been there themselves.

No one knows what it's like to never hear your child cry until they are a year old because there are tubes down his throat preventing his vocal cords from working - unless they have been there themselves.

No one knows what it's like to not hold your child until 2 weeks after he was born because he's hooked up to too many machines keeping him alive - unless they have been there themselves.

No one knows what it's like to lose count of how many IVs your child has had, or what scars are from what surgery, or how many meds he's been on in his entire life, or doctors he's seen - unless they have been there themselves.

No one knows what it's like to be on your hands and knees in a surgical waiting room begging and pleading with God to take you instead of your child - unless they have been there themselves.

No one knows what it's like to put a tube down your child's nose and into their stomach, or past the stomach - while making sure not to hit the lungs - so that your child can eat formula from a pump - unless they have been there themselves.

No one knows what it's like to miss a pulse ox when it's gone because then you can't sleep because you're terrified that your child will stop breathing - unless they have been there themselves.

No one knows what it's like to hook your child's ventilator up to a car battery because the power is out, while screaming at the electric company to fix the problem and talking to the doctors and ordering an ambulance at the same time - unless they have been there themselves.

No one knows what it's like to call 911 more than you call the pizza delivery place - unless they have been there themselves.

No one knows what it's like to duck from flying hearing aids because your 2 yr old can't understand that they aren't toys and need to stay in his ears - unless they have been there themselves.

No one knows what it's like to watch "normal" healthy kids and make wishes for your child that you aren't sure will ever happen, like riding a bike or going to school or playing baseball - unless they have been there themselves.

No one knows what it's like to have had more rides in ambulances in your life than in taxi cabs - unless they have been there themselves.

No one knows what it's like to go out in public and have people point and whisper about your baby, because he's in his stroller attached to a vent, oxygen tank, feeding pump, and pulse-ox - and yet you put on a cute little outfit or a baseball cap on his head in a feeble attempt to make him look less conspicuous and more normal - unless they have been there themselves.

No one knows what it's like to go into the ladies room and cry alone because you don't want your baby to see you crying beside his hospital bed - unless they have been there themselves.

No one knows what it's like to try to sing songs and read children's books to your child like everything is normal and you so desperately want all the normal things healthy families have, even though you don't know if your child will live through the week because he has a blood infection - again - unless they have been there themselves.

No one knows what it's like to be told your child's kidneys are shutting down, oxygen levels are below 50, and he won't live through the night - but he does - unless they have been there themselves.

No one knows what it's like to travel with more electric equipment in your car than the FBI - unless they have been there themselves.

No one knows what it's like to spell D-I-A-P-H-R-A-G-M-A-T-I-C H-E-R-N-I-A in your sleep - unless they have been there themselves.

No one knows what it's like to hire home health nurses and then have to oversee them and make sure that they aren't sleeping when your child's vent pops off his trach at 1 am - unless they have been there themselves.

No one knows what it's like to jump up and down squealing because your child is walking - at 2 and a half yr old - unless they have been there themselves.

No one knows what it's like to battle the school system and have an IEP for a child who has a feeding tube, hearing aids, thick eyeglasses and being told that they "can't handle all his issues" so you are better off homeschooling - unless they have been there themselves.

No one knows what it's like to consider moving to another country to get their universal health care because your child doesn't qualify for any decent insurance with all his pre-existing medical conditions and you can't afford the medical bills of the $6 million dollar baby unless you make so little money that you qualify for Medicaid - unless they have been there themselves.

No one knows what it's like to be asked "so what caused him to be sick?" while being looked at like YOU did something to cause it - and have the only answer that anyone has to that question "I DON'T KNOW!" - unless they have been there themselves.

No one knows what it's like to carry medical records with you every where you go "just in case" - unless they have been there themselves.

No one knows what it's like to perform CPR on your own child - more than once - unless they have been there themselves.

No one knows what it's like to plan holidays and vacations around hospitalizations, doctor visits, therapy appts and cold and flu seasons - unless they have been there themselves.

No one knows what it's like to not be able to go home for Christmas because your child could catch a cold that would kill him - unless they have been there themselves.

No one knows what it's like to grieve a LIVING child because your dreams are gone, then living with the guilt of feeling that way - unless they have been there themselves.

No one knows what it's like to try to communicate with a child who can't talk and struggles with sign language to the point that both of you cry - unless they have been there themselves.

No one knows what it's like to be young and have the responsibility of not only being a parent but a parent of an extremely special needs child - unless they have been there themselves.

No one knows what it's like to scream down the hospital hallway "Help! My child can't breathe!" or "Where is my son's 2:00 meds?" or "He is allergic to that!" - unless they have been there themselves.

No one knows what it's like to leave the hospital without your baby but with his bed sheets and linens instead because he's allergic to EVERYTHING and so you wash them in gentle detergent and bring them back for him - unless they have been there themselves.

No one knows what it's like to live in constant worry that another child will spill his milk on your child, sending him into anaphylactic shock if the epi pen you carry EVERYWHERE isn't given fast enough - unless they have been there themselves.

No one knows what it's like to be in the hospital so much you're on a first name basis with your surgeons, PICU doctors, nurses, secretarial staff and the cleaning crew - to the point that you double-date with your spouses, take vacations together and still send each other Christmas cards 15 yrs later - unless they have been there themselves.

No one knows what it's like to be in the hospital so long that when you come home you actually miss the cafeteria food - unless they have been there themselves.

No one knows what it's like to spend every hour that visiting isn't permitted in the PICU in the medical library, looking up your child's birth defect because NO ONE SEEMS TO KNOW WHAT THE HELL IT IS or where you can find information or support. And then spending hours beside your child's hospital bed with a medical terminology book translating it all - unless they have been there themselves.

No one knows what it's like to be told that your child won't live to be transported to the larger hospital so you should say good-bye - unless they have been there themselves.

No one knows what it's like to have a surgeon tell you "we've done this surgery so many times on him that we aren't sure how else to go in there" - unless they have been there themselves.

No one knows what it's like to watch your child's first haircut being done by a nurse to prep for an IV going into this head instead of at the barber - and still taking photos of it for his baby book - unless they have been there themselves.

No one knows what it's like to be told that your son will never see or hear or breathe on his own, and then show them that they are wrong - unless they have been there themselves.

No one knows what it's like to be so frustrated with feeding therapy, begging your child to please "take just one bite for Mommy, PLEASE" - unless they have been there themselves.

No one knows what it's like to be so excited to meet a medical professional who UNDERSTANDS what CDH is and who really, truly cares about these kids, your kid, and how that person now has your gratitude and part of your heart forever - just for caring - unless they have been there themselves.

No one knows what it's like to lose your child - unless they have been there themselves.

No one knows what it's like to lose your child in your own arms, while they look up at you and you try and try to save them but can't - and the guilt you live with every day for not being able to perform a miracle, the impossible, more than even the doctors because you're mommy and you're supposed to do the impossible - unless they have been there themselves.

No one knows what it's like to pick out the clothes your child will be in forever, buried in and what toys and books to pack with him - unless they have been there themselves.

No one knows what it's like to cry so much your heart feels like it's coming out of your throat because you miss your baby so much - unless they have been there themselves.

No one knows what it's like to mourn and grieve and try to make something good come from all the sadness without going over the deep end and trying to make a martyr out of your child's memory and turning them into a superhero instead of ... your baby .... because you want to remember them for who they were and not who you wanted them to be - unless they have been there themselves.

No one knows what it's like to ask God a different "Why my child?" question millions and millions of times until He cries with you - unless they have been there themselves.

I know, because I have been there. I didn't read it in a book or in someone else's story. I didn't learn about this from an article or research abstract. I don't pretend to understand things I never experienced. I lived it all. I cried it. I survived it. I woke up to every single day. I slept with it on my mind every single night. I was immersed in this world of CDH for 6 and a half years. I still am. CDH is more just a birth defect. It's more than a day or a few weeks in the hospital. It's more than 1 surgery. It's every single moment in a cherub's life. Every single one. I know this because I lived it.

And I know over 3400 other moms who have lived it too. Who understand. Who didn't learn from book or stories but who lived it. Parts of it or all of it. They understand. They are the moms and dads and children of CHERUBS.

http://www.cdhsupport.org

Way back when...

(reposted from 1/ 10)

CHERUBS is almost 15 yrs old. 15 years old in February. Wow! We have achieved so much over the years. Some parents remember what it was like to have a CDH child 15 yrs ago - there was NO SUPPORT. No information. No organizations. No internet. No library books that explained things. No help from any other organization for birth defects. No nothing. You were alone, without information, without support, trying to stay afloat in all the CDH lingo and stress.

When my son was born the doctors gave me little information. Let's just say his surgeons he had the first yr of his life did not have very good bed side manners. Any information that I had, I either learned from the nurses, respiratory therapists, another CDH mom, neonatalogists or in the medical library myself. I used to lug a diaper bag around the hospital - not full of baby supplies because my baby was lying in intensive care - but full of research articles that I copied out of medical journals in the library. I was in Duke's medical library so much I had a library card, knew the staff and knew which computers and copiers worked the best. Some days that diaper bag would be so full I could barely carry it. I'd unload the research articles on a tray table beside Shane's hospital bed, pull out a highlighter and go through each one finding information.... all while he slept beside me drugged up on Fentanyl or Morphine or any number of painkillers and sedatives while he was recuperating from surgery or a complication.

It was in these medical journal articles that I learned that despite the surgeon's claims that there was only 1 pediatric trach made in the entire world and we had to use it, even though it was causing a stoma so large in my son's throat that you could see his esophagus and we had to pack and pack gauze in the wound while he cried (under sedation) because it hurt so bad - that there was indeed more than 1 trach manufacturer for pediatrics.

It was in these medical journal articles that I learned that it was completely absurd to use tissue from a pulmonary sequestration to try to repair a hernia because NO ONE HAD EVER DONE IT BEFORE... before it had been done on my son, when I was 19 and he was 3 days old and I didn't know to say no. I didn't know because I had no information.

It was in these medical journal articles that I learned that CDH is as common as cystic fibrosis and spina bifida. I learned about recessive genes and possible links to CDH. I learned about Cornelia de Lange Syndrome when the doctors thought Shane might have had it (he didn't). I learned about using abdominal wall muscle to repair CDH and presented the surgeons with printed articles when they said I was crazy for suggesting it.

I learned and I read and I studied and I learned some more. When Shane came home from the hospital, I continued to learn and read. I signed up for classes at the local community college for medical terminology, biology and anatomy so that I could learn more. I took alternative courses at UNC for genetics and embryology. I learned what epidemiology was and gained a passion for it.

I learned to get Shane a new surgeon - and I did and she was and is amazing, and is still on our Board at CHERUBS, along with many other surgeons and nurses and epidemiologists that I met in my research over the years. I am so proud to say that our Medical Advisors and conference speakers are the best in the world!

I took all this knowledge... though in the grand scheme of CDH, it's just a drop in the bucket because no one knows all there is to know about CDH still.... and together with another CDH mom, started CHERUBS. Not because we wanted support. Not because we wanted to make our own cherub's saints or immortalized or put on pedestals. Not because we wanted recognition or to make friends or be popular... because that's not our personalities and because that didn't even exist in the days of writing letters through postal mail. But for 1 reason - because we didn't want other families to go through CDH alone and without information.

We met more CDH moms and together we took our combined knowledge and we compiled CHERUBS Congenital Diaphragmatic Hernia Research Surveys - by hand. This knowledge bought us to conferences around the country, bought CHERUBS to the CDH Study Group table. This knowledge is what created CHERUBS.

This knowledge is something that parents should have at their disposal without having to go through all I did to gain it, or all Rhonda did to gain it. That is what CHERUBS is for.

15 yrs ago there was no internet. Our organization was started by writing letters, 1000's of letters. You did not get immediate responses like today's e-mail - you sometimes waited months. You did not have information within seconds through Google - you drove to a library and you found it in a book.

12 yrs ago CHERUBS went on-line. Our first web site was a year later. There was no free web site software, there was no myspace or facebook. Google wasn't around yet. You had to hand code html to create a web site. You had to search and search for CDH families to build an on-line support group. There was no free software or blogs to help. There were no other support groups to join and learn from and get members from to start our own. We were pioneers.

We worked hard. We created our site. We added 100's of pages of information for CDH families. We lost countless hours with our families and cherubs to put all the on-line resources together for other CDH families. We learned what a chatroom was. How to use search engine optimization. How to install a database. We learned how to create graphics and a logo and our own site template. We started our listservs on Yahoo in 1998 and then upgraded to forums, which are safer and more user friendly. By trial and error, we learned. With no one to teach us, we learned.

Now, in 2010 there are many support groups. Anyone who can create a free blog or listserv or Facebook page and fill out a form on the IRS site with free software can create a non-profit support group. How amazing it is that so much has changed and how I wish it had been that easy for us! Now organizations are taking all CHERUBS has done and our groundwork and building off of it... furthering our cause. Learning more about CDH. Helping more CDH families. Some have said that we haven't gone far enough in 15 years - but we stared with nothing, we laid the foundation, we broke ground - and we are still working, still building, still doing new things every year. We are still leading the way and inspiring others.

How far we all have come..... how far CHERUBS and the CDH community has come in 15 years. Happy Birthday CHERUBS!!!!

We will not stop until there is no longer a need for CDH information, support or awareness - because CDH no longer exists.

Information and the History of Congenital Diaphragmatic Hernia (2008 reprint)

Originally posted by CHERUBS in 2008...

History of Congenital Diaphragmatic Hernia

- Diaphragmatic Hernia was first described in 1575 by Pare' in reporting in 2 autopsies of adults who had acquired diaphragmatic hernias by trauma.

- In 1672, the first description of Congenital Diaphragmatic Hernia was reported by Lazarus Riverius during the autopsy of an adult male. Miraculously, this man lived 24 yrs with CDH in the 17th century.

- In 1701, Holt reported the first case of CDH in a child.

- In 1796, Morgagni discussed various types of diaphragmatic hernia, including the anterior CDH that bears his name.

- In 1827, Cooper described the symptoms, pathology and classification of CDH.

- 1834 Laennec was the first to suggest a laparotomy that could be used to withdraw intestine from the chest cavity.

- In 1847, Bowditch presented the first collected series of patients with diaphragmatic hernia in 1847 before the Boston Society for Medical Observation.

- In 1848, Bochdalek, described CDH that occurs posterolateral. This now bears his name.

- In 1888, the first recorded attempt of a laparotomy to reduce the hernia was made by Naumann.

- In 1902 the first reported successful operation of an infant born with CDH

- In 1946, Robert Gross reported the first successful repair of a CDH in a baby less than 24 hours old.

- In 1976, ECMO (Extracorporeal Membrane Oxygenation) was first used successfully in the treatment of persistent pulmonary hypertension.

- In 1976, doctors first used lambs to create a CDH, researching for the cause and best treatment of CDH.

- In 1989, Michael Harrison led the team at the UCSF in the first succesful open fetal surgery for CDH.

- In 1992, "Gentle Ventilation" of CDH first began at the University of Florida, led by David Kays

- In 1994, the first NIH sponsored clinical trial for fetal surgery was done at UCSF for the open repair of congenital diaphragmatic hernia

- In 1995, The CDH Study Group was formed with medical professionals from the around the world with a vested interest in CDH.

- In 1995, the first international organization for families and medical care providers of children born with Congenital Diaphragmatic Hernia was created. CHERUBS still leads the CDH community in providing support and works with the medical committee to provide information and research options.

- In 1996, first successful fetoscopic temporary tracheal occlusion for CDH was done at UCSF by Harrison and team.

- In 1997, CHERUBS published it's first Congenital Diaphragmatic Hernia Research Survey Results, tallying research data from families.

- In 1997, the first on-line information site for CDH was created by CHERUBS.

- In 2000, First NIH sponsored randomized controlled trial for fetal surgery was done at UCSF

- In 2000, the first international conference for families affected by CDH was held in Orlando.

- In 2007, the Association of Congenital Diaphragmatic Hernia Organizations (ACDHO) was formed.

- Also in 2007, the Official Congenital Diaphragmatic Hernia Awareness Ribbon was created by families of children born with CDH to help raise awareness and research of the birth defect.

- In 2007, the first on-line forum specificially for CDH was created

- In 2008, CHERUBS created the first web site dedicated solely to free access of information for research of CDH.

- Stonewall Jackson suffered from an unrepaired Diaphragmatic Hernia. Whether it was Congenital is not known.

- CDH occurs in 1 of every 2500 to 4000 babies, as reported in 2006 by The CDH Study Group. The survival rate is still 50%.

- The cause of Congenital Diaphragmatic Hernia is still not known but it has been associated with several genetic anomalies such as Fryns Syndrome, Cornelia deLange System, Trisomy 18, 21 and 22.

- Is has been suggested in some medical journals, but not proven, that thalidomide, quinine, phenmetrazine and nitrofen may cause CDH. A Vitamin A diet deficiency is known to cause CDH is lab rats.

- 20% of CDH pregnancies also are diagnosed with polyhydramnios, an over abundance of amniotic fluid


In CHERUBS Membership:

- CDH has both occurred and not occurred in identical twins.

- We have many set of fraternal twins with one baby with CDH and the other healthy

- 3 families out of 2500 have had 3 children each with CDH. The reoccurance rate of CDH in siblings, without any other birth defects or genetic anomalies is 2%

- Our oldest living survivor of CDH is 62 years old. We have over 100 survivors over 18 yrs old.

- 3 of our members, all male, have had 6 CDH repairs each.

- CDH has been diagnosed in utero as early as 10 weeks for several of our members.

- Many of our adult survivors have gone on to have healthy babies and pregnancies of their own. Only 2 families have both a parent and a child born with CDH.

- Several of our members were diagnosed with CDH after 2 yrs old, with the oldest over 40 yrs old.

Wednesday, November 10, 2010

Tuesday, November 9, 2010

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!




  • 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)
  • 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:











     

Saturday, November 6, 2010

Some Of The Great Items That Will Be Included In Our 2010 Holiday Ebay Auction!

Vacations

Shows / Events / Concerts


Tickets / Adventure Packages


Sports Items / Vacations / Tickets
Baseball
Hockey
Basketball
Golf
Nascar

Olympic Sports / Other Sports
    • Secretariat at Belmont Shadowbox with Racing Program, Ticket and Racing Program Hand-Signed by Ron Turcotte*
    • Ivan Lendl Hand-Signed Autographed Photo
    • Mahogany Poker Chip Case with 600 clay chips**
    • MagnaCraft 10x50 Binoculars**

Movie Celebrity Items


Television Celebrity Items


Music / Radio Celebrity Items

Art

Jewelry /  Personal Items
  • Russian Blue Luster Necklace and Earring Set**
  • Akoya Saltwater Chocolate Pearl Necklace and Earrings Set**
  • Akoya Saltwater White Pearl Necklace and Earrings*
  • Italian Vecceli Watch*
  • Gold Necklace, in memory of Hari

Household Items

"Save the Cherubs" Holiday Cards - We need your photos!

We are selling Save the Cherubs holiday cards this year!!!!   But we need your photos!!!  Grab / order some wings and take your cherubs (or siblings and a photo of your cherub) and go early to visit Santa, see the mall decorations, decorate a tree or a visit a Christmas shop.   Photos needed by November 15th!

A few things...
  • You can order wings at http://www.savethecherubs.org
  • It's best to wear bright clothing to contrast with the wings
  • Photos must be "candid" (no looking straight at the camera) - our campaign is about cherubs in every day life
  • We must have your model paperwork in! Paperwork can be found at http://www.savethecherubs.org


Possible photo opportunities....
  • Decorating a Christmas tree
  • Hanging a wreath
  • Lighting a menorah
  • Caroling
  • Visiting Santa
  • Riding in a holiday train
  • Shopping in the mall (decorating for Christmas)
  • Browsing in a Christmas shop
  • Opening presents
  • Sledding
The point is to show the holiday spirit through a child's eyes... a cherub's eyes.


ALL cherubs can participate!  Even non-survivors (through their siblings or cousins and by including their photo somewhere in the picture.  A sibling/cousin can wear wings and represent your cherub) and expectant cherubs.

ALL submitted photos will be included and sold through our shop on Cafepress.com

Cards will be available to purchase by November 20th!  What a great way to raise CDH awareness!!!!

We also need photos for our Save the Cherubs calendar for November (Thanksgiving, leaves, football or something similar), December, March and April.


Save the Cherubs
Congenital Diaphragmatic Hernia Awareness Campaign


Photo Taken By Mandy Sroka Photography - http://www.mandysrokaphotography.com/
Cherubs are everywhere.  They are your next door neighbor's new baby.   The little girl on the swingset at the park.   The teenager that sits behind your son in high school geometry class.   The person behind you in the grocery store line.    Their scars are hidden under clothes, their stories a bit sad and taboo to talk about - so the miracles are not seen with the naked eye and you have probably mistaken a cherub for a "normal" person many times.   But they are there; walking miracles with invisible wings.   And missing babies that belong to the grieving parents who you don't see grieve;  your local bank teller, the man who held a door for you at the gas station, the old woman who drove the car in front of you at the stop light this morning.   Cherubs are everywhere.

Unless you have been affected personally by CDH, you probably have never heard of it.   The mission of "Save the Cherubs" is to make Congenital Diaphragmatic Hernia a phrase everyone knows how to say and everyone knows what it means.  By raising awareness, we hope to raise research funds to save these babies - Save the Cherubs.

Congenital Diaphragmatic Hernia occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth.   Babies born with CDH often endure long hospitalizations and other complications such as pulmonary hypertension, infections, feeding issues, asthma and temporary developmental delay.    Some babies develop worse complications and sadly, 50% of babies born with CDH do not survive.    The cause of CDH is not known.

Cherubs are people who were born with Congenital Diaphragmatic Hernia, a severe and often fatal birth defect that occurs as often 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.   Yet, CDH is given very little media attention, virtually no research money and until CHERUBS came along in 1995 there was no information and no support for families of babies diagnosed with CDH.   We have no national telethons, no large corporate sponsorships.   We have been struggling for years to bring attention to CDH and now, we are going to do so on a national level.

For 15 years, cherubs have been the awareness symbol of Congenital Diaphragmatic Hernia (CDH).   Through this project, families around the world are working with CHERUBS, photographers and the media to raise CDH awareness in a unique and striking photo and marketing campaign, which we hope will take your breath away and make you want to learn more about CDH and how you can help save these children.

CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support  was founded in 1995 to give hope and information to families of children affected by Congenital Diaphragmatic Hernia (CDH).    We are a 501(c)III non-profit global CDH organization with members in 38 countries.    Run solely by volunteers and donations, CHERUBS strives to allow families to have free access to information materials, support services, awareness projects and to make a CDH connection with other families going through the same ordeal.  We are just a grassroots organization of families working hard to make a difference and trying to give Congenital Diaphragmatic Hernia Awareness wings to take flight.

CHERUBS is fighting hard to search for the cause, prevention and best treatments of CDH.   We invite you to help us to help these families and to help Save The Cherubs.


Congenital Diaphragmatic Hernia Awareness Ribbon

CHERUBS 2011 Congenital Diaphragmatic Hernia Calendars

Each year CHERUBS creates calendars to raise awareness.  They make great holiday gifts!  

The deadline to submit your cherub's photo is November 15th.  You must be a member and you must give publishing permission on your membership form.  Membership is free.  You can join at http://www.cdhforums.org

Submit your photo by either e-mailing it to us at membership@cdhsupport.org with your cherub's name and date(s) or by adding it to 1 of the 2 main photo albums on our site (Survivors and Non-Survivors). You can also update your survivor's photo by e-mailing it to us.

ALL cherubs are welcome to participate, both survivors and those with wings!  Even those cherubs not yet born can join in (send us an ultrasound photo or maternity shot!).   We can only include 1 photo of each cherub to have enough space.  Last year we included over 700 cherubs!  :)   You can still order it at http://www.cafepress.com/cherubs.415954058

Our calendars will go on sale on December 1st!  :)


We are doing 2 calendars for 2011! :)

Calendar #1 will be like our calendar last  year but of course different graphics.  We work HARD to make sure anything that we sell looks professional as don't want anything cheesy to represent these cdh babies and families!  We think our volunteers do a pretty darn good job with graphics!   :)   Check out last year's calendar below.  You can still order it at http://www.cafepress.com/cherubs.415954058   Please send your cherubs' photos (survivors and non-survivors) to membership@cdhsupport.org and make to include their name and date(s)!   Photos must be submitted by November 15th.  

Calendar #2 will be 13 "Save the Cherubs" photos.   This calendar will be sold not only to members but the public as well.  But to make this one we need 13 month appropriate photos!  So those of you with wings (or go order some at http://www.savethecherubs.org)....  we need a good fall / football photo for November, Christmas photo for December, and photos for March and April.   Make sure they don't look posed!  ;)   All photos submitted will also go to our "Save the Cherubs" campaign - and all those posters, graphics will be ready by November too.  Photos must be submitted by November 15th. 




Image
Cover
See, it pays to send us photos of your kids dressed like cherubs! Wink

Image
January

Image
February

Image
March

Image
April

Image
May

Image
June


Image
July

Image
September

Image
October

Image
November

Image
December

Thursday, November 4, 2010

CHERUBS Ebay Auction - Make some holiday spending cash and help a great cause!



On November 20th, CHERUBS will hold an Ebay auction to raise funds and also to give members an opportunity to raise holiday spending money, CDH awareness and donate to a great cause!   



How to participate?   
Selling:  Sign up to Ebay.com and start collecting items to sell on November 15th (we will post more detailed instructions soon). 
What to sell?  ANYTHING that Ebay will allow you sell!   Old kids' clothes, unwanted toys, unused housewares, old schoolbooks, etc.   Clothes, furniture, books, collectibles, toys, electronics, vacations, even cars can be sold on Ebay!
We ask that you donate a minimum 50% of the item's selling price to CHERUBS.   Keep the rest or donate it all!  Your choice!  
Buying:  On November 15th, drop by our web site and and Ebay link and view all the items our members have fore sale!   Go holiday shopping and help our cause!   All items that were not sold in our silent auction at the Angel Ball will be up for sale!

The great thing about Ebay is that the costs are low.  They charge a very small selling rate.  CHERUBS pays NO overhead costs to hold our auction there, unlike expensive charity auction sites - and we get the benefit of millions of Ebay buyers - all while raising CDH Awareness!!!


 http://p.ebaystatic.com/aw/pics/holiday/holiday2010/imgGiftBoxesFtr_155x68.gif

Cherubs on Parade!



We started the "parade of cherubs" with our 2010 Congenital Diaphragmatic Hernia Conference.  Now, we are also starting "cherubs on parade" with our first annual participation in holiday parades!

Drumroll please....  CHERUBS will raise CDH Awareness to over half a million people in the Raleigh Christmas Parade!

We have a float in the largest parade between DC and Atlanta and it is televised 3 times + the 10's of 1000's of people at the parade!!!   16 cherubs, siblings a few parents will ride in the parade as part of our "Save the Cherubs" Congenital Diaphragmatic Hernia awareness campaign!

Want to participate?!  Grab some members, family, friends and some wings, a sign about CDH and be in your own hometown holiday parade!  We would LOVE to see CDH represented in parades all over the country!!!!  :)