Monday, June 21, 2010

PRESS RELEASE: Raleigh Charity In Close Race To Win $100,000 National Contest

Local Nonprofit Organization In National APX Gives Back Contest In The Running For $100,000 To Help Raise Awareness and Research Funds for Devastating Birth Defect


Raleigh, NC - CHERUBS, a non-profit organization founded to help families of children born with Congenital Diaphragmatic Hernia (CDH) learned about a contest on Facebook through a member expecting a baby with CDH.

Alarm company, APX, based out of Provo, Utah is known to be very generous to the non-profit community. This contest is yet another way that this company gives back. 5 lucky charities will win $30,000 and another charity will walk away with a grand prize of $100,000.

The APX Gives Back contest is made possible through a software application on the popular social media site, Facebook. It began on May 3rd with Facebook users nominating their favorite charities in 5 regions. On June 14th, the top 15 charities from each region made it to Phase II, where the votes were reset and the real competition began. The charity with the most overall votes by August 21st will be awarded $100,000, while the other charities in the remaining regions with the most votes will receive $30,000 donations.  CHERUBS has steadily held first place in the Eastern Division.

CHERUBS not only made it to Phase II but has been battling it out for 1st place with a division of the Prader-Willi Syndrome Foundation also based in Utah. The two charities have been remained within 200 votes of each other, trading between 1st and 2nd places. “We are so excited to be doing so well in this contest and to be in the company of so many other wonderful charities! We have learned so much about other causes and became friends with many, including members from the Prader-Willi Syndrome Foundation and we are already looking into ways to work together on projects for both our causes. No matter who wins this contest, we will all come out as winners. This has been a wonderful platform to raise awareness for all of our causes” said CHERUBS President, Dawn Williamson.

Founded in 1995 by Mrs. Williamson and based here in the Triangle, CHERUBS is the world’s first and largest CDH organization with over 3300 members in 38 different countries and all 50 states. Dawn is the mother of Shane Torrence (1/28/93-9/11/99), born with left-sided CDH and multiple birth defects. Shane spent his first 10 months in the pediatric intensive care unit of Duke University and had many other hospitalizations and surgeries at the University of North Carolina at Chapel Hill.

“I miss my son every single day; CDH took him from me and robbed him of any type of normalcy during his short life. I lost the chance to watch him grow up and grow into a young man; learn to ride a bike or drive a car; go to college or get married or have children of his own,” said Williamson. “No mother’s arms should ever ache for a child she can no longer hold. Shane was an amazing little boy that was always happy despite the fact that he spent so much of his life in the hospital. CDH devastated our family.”

Williamson made it her life’s mission to help other families affected by Congenital Diaphragmatic Hernia. If there is any doubt of faithfulness to this mission you need only to read the glowing reviews families around the world have posted all over the internet about how CHERUBS has helped them through their darkest days, see all the services listed on their web sites or count the over 11,000 fans they have on Facebook.

Congenital Diaphragmatic Hernia occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. It affects 1 in every 2500 babies, representing approximately 1600 babies in the United States each year, half of which do not survive. Some of the other half, like Williamson’s son, who only lived until the age of 6, end up suffering through life with lasting health problems such as feeding aversions, gastrointestinal problems, asthma, allergies, scoliosis, or long-term pulmonary problems.

In the U.S., there are annually more victims from CDH than tornados, hurricanes and lightening strikes combined. There are more children born each year with CDH than there are children born with Cystic Fibrosis or Spina Bifida, and although there is no known cure or typical treatment, there is still a significant lack of research and awareness in the public and medical communities about CDH. According to a Congressional Bill the charity is hoping to get passed for CDH Research, the estimated total annual economic impact of Congenital Diaphragmatic Hernia in the United States is in excess of $800,000,000 while annual grants allocated by the National Institutes of Health for CDH at several research facilities is currently estimated at less than $5,000,000. Through this contest and other efforts, CHERUBS hopes to raise more awareness and funds for research and family support. “These babies are dying by the hundreds and there is no known cause. The survival rate is only 50%. This just cannot be acceptable” says Williamson.

“This contest has not only allowed us to dramatically raise awareness about Congenital Diaphragmatic Hernia but it has offered us the opportunity to raise more money for our charity than we ever have before. $100,000 can do so many things for the CDH community and we are so grateful to APX and to everyone who is voting for us.” For a small charity powered by volunteers, donations and fundraisers and run in a spare room of Williamson’s home to save funds, $100,000 could indeed go a long way. “We have over 3300 members and all of our services are free to CDH families. We run a very large web site with forums for families to gain information and support 24 hours a day, an annual international Congenital Diaphragmatic Hernia conference, the world’s largest CDH research database, we send care packages to new and expectant parents and so many, many other services on less than $35,000 a year. Our budget averages about $10 of assistance per family, which is ridiculous but we somehow pull it off. Winning this contest could do so much for our ability to help more CDH families!” says Williamson.

Families affected by CDH agree. “I vote because my sweet baby Mallory has opened our eyes to a terribled condition that we knew nothing about at the time. And from the statistics we have learned about CDH it saddens me that this illness is so unknown. CHERUBS has been my crutch from day one of diagnosis. I cannot imagine going through all of this without the support and information I have gotten from the organization and its members. Mallory was born on Jan. 4th of 2010, and still going strong in the hospital, and CHERUBS has been there for us every step of the way. God bless you all, and thank you from the bottom of my heart” says mom Sara Jimel Givent.

“I am voting in memory of our sweet Joshua who was born on March 26, 2010 and was with us 16 days. We love him and miss him terribly. If CHERUBS can win the $100,000, maybe another family won't have to go through this” wrote dad Jeff Campbell.

“Voting for my son Brandon who was diagnosed with CDH two days before his delivery in 2004. The only information we could find that even gave us hope was "CHERUBS". His outlook was not good but he is strong and healthy today because of UNC Children’s Hospital and Brandon’s drive to survive. Thanks CHERUBS for all the hard work and dedication that you provide for families struggling with this horrible birth defect. You gave us hope when we had none and during the long stay in the hospital. This continued even when we were dealing with many of the issues after we finally got him home” writes Fayetteville resident Cheryl Sandoval.

The fight to help these families is also obviously apparent in the members of CHERUBS. “When I was lost and all alone I turned to the internet hoping to find someone who cared...I found CHERUBS and a WHOLE BUNCH of FABULOUS someones who KNEW how I felt without me having to explain...CHERUBS has been my lifeline through our journey with CDH. There is always someone there with a comforting word when you need it, or someone who listen to you rant and vent when need be. It's a WONDERFUL group of people who I am proud to call my CDH family. I'm so sorry we've all met due to CDH, but if we all stick together, there's no telling what we can do to help rid the world of this terrible birth defect” says Canadian mom Shana Kelly.

CHERUBS welcomes the community’s support and votes in this contest. If you would like to help this organization you can vote through Facebook at  CHERUBS is in the Eastern division.

Proceeds from the contest will benefit CHERUBS Research and Support Funds, and Williamson is hoping that the contest will bring out many supporters and media to help gain recognition for both CDH and the organization’s efforts.

CHERUBS will also gladly accept any donations to help further their work. Tax-deductible donations can be made on-line at or mailed to CHERUBS, 3650 Rogers Rd #290, Wake Forest, NC 27587.

To help raise more awareness and money for the organization, as well as funds to continue research and outreach, CHERUBS will be hosting a key fundraising event this fall. The CHERUBS 2010 Masquerading Angels Ball will be a formal event held on October 30th at the Durham Hilton near Duke with celebrity guests, a live band, casino and an auction. More information on this event is available at

“There is still so much research that needs to be done. In 2010 this birth defect should not still exist, much less still have so many unanswered questions and so little research,” said Williamson. “CHERUBS wants to be able to help as many families as possible, because we understand the hurt and confusion that comes along with having a child with CDH. We want to spare other families from the devastating effects of CDH and we will keep fighting, keep researching and keep raising awareness until the cause and prevention of CDH is found.”


CHERUBS is a 501(c)3 organization located in North Carolina. CHERUBS serves families of children and adults born with Congenital Diaphragmatic Hernia (CDH). As of June 2010, CHERUBS has over 3300 members in all 50 states and 38 countries. Board Members include the founding father of in-utero surgery, genetic counselors, epidemiologists, pediatric surgeons and parents of children born with CDH. CHERUBS is a volunteer-run organization and a United States Internal Revenue Service recognized 501(c)3 Non-Profit Organization.
This video was done by Dawn Williamson for APX after she won 2nd place in their Memorial Day contest.  It features many cherubs and raises awareness!   Feel free to repost this vide, this press release or any of our information to help promote CDH awareness.

More quotes from CDH families on Facebook:


Sara Jimel GIvent is my daughter, Mallory my grand-daughter. I suooort absolutelly. Thank you for your support. --JW


When I was lost and all alone I turned to the internet hoping to find someone who cared...I found CHERUBS and a WHOLE BUNCH of FABULOUS someones who KNEW how I felt without me having to explain...CHERUBS has been my lifeline through our journey with CDH. There is always someone there with a comforting word when you need it, or someone who will ... See Morelisten to you rant and vent when need be. It's a WONDERFUL group of people who I am proud to call my CDH family. I'm so sorry we've all met due to CDH, but if we all stick together, there's no telling what we can do to help rid the world of this terrible birth defect.


I vote because My sweet baby Mallory has opened our eyes to a terribled condition that we knew nothing about at the time. And from the statistics we have learned about CDH it saddens me that this illness is so unknown. Cherubs has been my crutch from day one of diagnosis. I cannot imagine going through all of this without the support and ... See Moreinformation I have gotten from the organization and its members. Mallory was born on Jan. 4th of 2010, and still going strong in the hospital, and Cherubs has been there for us every step of the way. God bless you all, and thank you from the bottom of my heart.


For our 8 year old survivor, Tyler!!! He rocks our world AND the CDH world!!!! He laughed as he recovered from CDH and only looked back once, and laughed at it again that time, too!!!!!


for our 7 year old survivor who has had 2 repairs. cherubs was the only place we could get any info or advice, without you guys we would have been on our own through out


In memory of our son Joshua 1984-1988.


for our little ray of sunshine, Lewis, LCDH survivor born 12th November 2009, he brought the sunshine back into our lives after 2 storms and he hasn't looked back, apart from the feeding tube you wouldnt even know, the info and support from CHERUBS was just amazing and helped us sooo much xx THANK YOU CHERUBS xx


Im voting for Cherubs for my wee boy Sonny who was born with CDH in Sept 2007. We were initially told he was a "non starter" and advised to abort him at 20wks, but we insisted on being transfered to Yorkhill where we understood the doctors had knowledge of the condition. It was the consultant/surgeon there that gave us more information and said ... See Morethat the only website that they feel happy for us to read was Cherubs, so we did and it gave us hope. Sonny had his operation @ Yorkhill (Glasgow) and spent 3 weeks there before coming home to us. He is a very happy wee boy and keeps in good health.


I vote everyday for CHERUBS!! My son Brayden was born on March 23, 2010 with Left CDH. This was all new to us... we had never heard of it before. He wasnt diagnosed until after birth. We both were transferred to another hospital. While we were notifying the rest of the family, my cousins was telling on of her friends about what was going on and ... See Moreanother person overheard it and contacted her friend that had a son who passed away with CDH. We got in touch with each other and she gave me of moral support and alot of information about CDH. She and her husband visited with Brayden and I. She asked the doctors questions that i never knew to ask. He had his surgery at 4 days old and is doing fairly well. Thanks CHERUBS for all that you do for the families dealing with CDH!!


Im voting in remembrance of our baby boy Joshua Levi Campbell who was born March 26, 2010 and passed away April 11, 2010. He was born with right sided CDH, a heart defect, and Downs Syndrome. He fought for his life for 16 days and then his body finally gave up. He was a tough little guy. I delivered him at 7 months pregnant, so we were told he ... See Morewould not make it at all. Everyone was surprised when he came out fighting, and breathing on his own even for a little while. During the pregnancy our doctors couldnt tell us much about CDH, thats when we discovered the Cherubs website. They have been so supportive throughout everything! The doctors at the hospital didnt even tell us as much as the Cherubs website. Without Cherubs, we would have felt lost and clueless. Now we are working to tell other hospitals and doctors offices all about Cherubs so they can give information to their patients as well. :)


Even though I've had liittle to do wth CHERUBS, I want CDH to be known to the world. I want everyone to know what it is and how devestatng it can be. How it takes away from the joy of pregnancy, how it isn't an "easy fix", the lasting effects even if you've had a successful repair. My Emily is nearly 2 1/2yrs old. I didn't get help from any ... See Moresupport group, but would like all future families of CDH to have easy access to support groups.

After the diagnosis we went straight to the internet for nfo. We thought Cherubs was confusing to navigate and ddn't want to join any group about sick children, I couldn't handle that my child would be on of the statistics. In retrospect I wish I had joined so I could've had support and more knowlegde before and during our 4 month hospital stay away from home, husband, kids, family and friends.
I want the public to understand how a child won't/can't eat because they didn't get a chance to learn how because she/he was too busy fighting for their life!


I am voting for CHERUBS in honor of my grandson Hayden born September 2005 with no diaphram at all. Both right and left was not there....given a zero change survival, God took Hayden and gave us the miracle that we needed and grew him lungs and gave him the breath of life. After 6 months in the hospital and 11 surgeries later....he is one healthy 4... See More 1/2 year old with only scars and a feeding tube that reminds me of his fight for life. CDH is rare in the area so a move to another city and hospital was the reason that he did so well. Vanderbilt Hospital is the place to go! Thanks to the CHERUBS website as we have learned so much of what others besides us have experience and understand what you went through. The world needs to know that this defect needs research to be able stop/ and or treat this when it happens.


Child’s Full Name: Kylee Freedom Green

Date of Birth : Born October 4, 2000

Date of Passing: October 5, 2000 - ... See More

Additional Items ~ Kylee was our 1st daughter. We were on top of the world with the news of our new arrival. On our 1st ultrasound we got the news of what would soon change our lives forever and make us stronger as a family. We found out our daughter had Left Side Congenital Diaphragmatic Hernia with stomach in her chest and small portion of her liver , heart defects, two vessel cord, and Trisomy 18. We had never heard of CDH before and went right home and started searching the internet for information. We found a wonderful support group CHERUBS who provided us with a wealth of information. From there we told family and friends our story. We hit the ground running and set up lots of appointments with doctors to get more information about our case and how & where to deliver our daughter with the best care for our situation. None of the hospitals in our area at the time ( Austin, TX ) had what was needed for her arrival so we headed to another location ( Houston, TX ) to meet with doctors and get a team set up for her arrival. We felt great with everyone we had meet and felt like it was time to hang tight and wait for her arrival. At our 35 week check-up I was told to go right to the hospital for and emergency c-section. Yikes…..I felt like we where dreaming. I’m not sure we were ready, but this little one had different plans. Kylee blessed our life for 14 wonderful hours and then went on to earn her wings. The doctors and staff did a wonderful job caring for her. Everyone will hold a special place in our hearts for all they did for us. We now have 4 other children who share our love of Big Sister Kylee. Maybe someday they will find a cause or cure for CDH babies. We never give up hope. Thank you Dawn for everything you have done throughout the years for SO MANY people.

Joe, Freedom, Trey (7), Skyla (6), Chloe (4), Elodie (1) - Make up our family Team!


I have been voting for my son Jayden! Found out 3 weeks before he was born that he had CDH. He is our little fighter, 1 surgery for CDH and 2 surgeries when he was 3 months old for malrotaion of his intestines.Now he is an active 18 month old who gets into everything and luckily no ill effects from the CDH!


Ruben Luis Aguirre IV-in memory of born Feb. 17th, 2010 passed Feb. 17th, precious grandson


I am voting for my precious grandaughter Chloe Elizabeth Tate born on the 8th September 2009 but sadly went to be an angel in heaven on the 11th September 2009, always in our thoughts. xxx


I voted in honorof my son Myles Hunt. He was born 11/27/2004.His prognosis was grim (as most CDH babies are).He is an ECMO survivor as well as surviving his CDH with half of a diaphragm, the other half being a gortex patch sewn to is rib cage. He continues to amaze his doctors and mommy and daddy EVERYDAY. WE LOVE YOU, Miracle Myles


I am voting in memory of my precious grandson, Dawson Gabriel Martie. He was born on May 16, 2009. Spent 12 days on ECMO. He earned his wings on June 4, 2009. So we have just passed that first year mark.


my daughter was born with CDH....but it wasnt diagnosed until she was 3 years old!!!!!....a right sided hernia of 90%....she is a very lucky young lady and after surgery....all is well - she has just turned 17!! My thoughts are with all who have these very special children.......


...just adding to our story, my little girl would not eat very much and failed to grow normally.I was feeding her up to 20 'meals' a day just to get her nutritional levels up!!! I took her to countless doctors and specialists who gave lots of 'diagnoses' but nobody considered a hernia because these special little ones do not usually get through ... See Moretheir infancy without the need for intervention. My advice to all parents...if you feel that there is something wrong with your child ..keep searching, the answer is out there!!


I am voting because of my little brother Sawyer. He was born with CDH and as a result he has cerebral palsy. He is my little angel, he can't talk, but his laugh is pure and good. He has beautiful blue eyes, and when I look into them I know that he is in there, somewhere inside his crippled little body. I love him so much. Sawyer six now, and he can walk, having him in our family has been a huge blessing.


I am voting for my little buddy Adam! 8 years ago we joined Cherubs and my goodness, did we need you then! From advice on the gtube to the support for a crying frustrated mom, there was even support for us when my little brother passed in Iraq, all the prayers and love that was given to us is still appreciated. We never felt alone from the time he ... See Morewas born and we found out until today. I know that if I need it there is someone there to talk to.

I am also voting for a family friend whose niece's baby was just diagnosed last week with CDH. Her baby is due in october and we are praying for her.

My youth pastor's (from many years ago) daughter also has CDH! For some reason I seem to be surrounded by it. They were such a blessing to see when Adam was in the NICU under going his repair. I haven't seen Joey and his wife since but they don;t know what a blessing they were to Dana and I when they showed up to the hospital with their precious daughter (then 3) and story.


Voting for our 2 beautiful Cherubs. I vote in memory of our angel Jayden & in honor of our survivor K who was diagnosed after having feeding problems after a few weeks of age.

Jayden was born Feb 19, 2010, was on ECMO for 7 days and after a successful weaning was gaining strength for surgery when the the pressure from the intestines in his chest ... See Morecompressed his heart causing insufficient blood flow to the kidneys. He grew his wings from kidney failure at age 23 days on March 14, 2010. Saturday he would been 4 months old.


I am voting in memory of our sweet Joshua who was born on March 26, 2010 and was with us 16 day. We love him and miss him terribly. If Cherubs can win the $100,000, maybe another family won't have to go through this.


I am voting for my youngest son Gunner. He was born with CDH and is going to be 3 next month. It has been a long journey but he is alive and doing well. I would like to know the cause of this condition and to help prevent any other children from developing this condition.


I am voting in memory of my precious granddaughter Chloe, who we lost to CDH last September aged 3 days. It was the hardest thing I have ever had to do to watch my daughter and her partner go through 20 weeks of pregnancy knowing that there was only a slim chance that they would have their beautiful daughter to ring home. To lose Chloe was the most painful experience of my life and if research can help someone else never experience this then I will vote every day for as long as it takes.


I vote in honor of my precious cherub Sawyer. 6 1/2 years ago the doctors gave us very little hope for survival. Today he is my miracle. His challenges are many. As a result of the CDH, he suffered an inutero brain injury and has cerebral palsy. He is my joy and my challenge and I love him every minute!!


I am voting in honor of my Emma. She is a CDH Survivor. She was given a zero chance for survival at birth, and here we are 2 1/2 years later. Dealing with the diagnosis of CDH prior to giving birth and the effects of CDH after giving birth to emma have been horrible. Emma is such a fighter, 9 surgeries down, another one scheduled for july 2nd. It ... See Morenever seems to end. It didn't stop at just CDH, the complications from the CDH are what we are dealing with now. These poor babies having to fight for their lives every day is so unfair.


Voting for my son Brandon who was diagnosed with CDH two days before his delivery in 2004. The only information we could find that even gave us hope was "Cherubs". His outlook was not good but he is strong and healthy today because of UNC Childrens hospital and Brandons drive to survive. Thanks Cherubs for all the hard work and dedication that ... See Moreyou provide for families struggling with this horrible birth defect.

You gave us hope when we had none and during the long stay in the hospital. This continued even when we were dealing with many of the issues after we finally got him home.


I am voting in Memory of my warrior Kaden James Morrow. He was born Aug 18th 2008 & chose wings Sep 16th 2008. Kaden was diagnosed at 16 weeks gestation with liver up at 21 weeks. Kaden survived for 29 days. The pain from losing a child is intense but I think it is even more difficult when you dont know why. There is no known cause to CDH and I ... See Moretruly believe my heart cannot heal until I know why. It wont bring him back but hopefully it could put an end to CDH and the devastating pain it causes. Not only did CDH take my son, it took a part of me. It took my daughters innocence and my husband's faith.


i am voting in memory of my son, jeremiah, who through his struggle with CDH has taught me how much stronger a person is than they originally thought. i hope CHERUBS wins this contest to aide our efforts and supporting the families of CDH, and to bring awareness to this suprisingly common yet devastating condition.


Cherubs has my vote,never knew about this until my friends grandbaby was born with it!God bless!


it has my vote too!! i lost my son to cdh in 1999. didnt find out about it til after he was born!! he lived less than 24 hours. he was my only lil boy!! my daughter will be getting marred on what would have been his 11th bday!! i love and miss him everyday,not a day goes by that i dont think about and miss you john joseph blocker 7/31/99-8/1-99


I am voting in memory of my son, Alexander Joseph Nazareth who was born 9/1/02 and lived 6 hours. He was such a fighter for such a little man. I have gone on to have two healthy daughters but there will forever be a hole where my little boy belongs.


I voted in memory of my daughter, Julia Noelle Faith (4/8/10 - 5/3/10).


I vote everyday in memory of my sweet baby niece, Julia Noelle Faith, who was born 4/8/10 and passed away 5/3/10. We miss you Baby Julia! XOXO


please everyone vote to have more research on this terrible congenital defect that takes babies' lives and has many children who do live struggle for life. Julia Noelle Faith is my grandbaby angel in Heaven. She put up a valiant fight but received her wings 5/3/10. Love always and forever Julia.


I was 20 weeks pregnant when my husband and I found out that our baby had CDH. That was the first time we had heard of it. The doctor (not my doctor) who read the results of the ultrasound, told us our baby had a hernia in the diaphragm and with surgery it would be taken care of.

I researched as much as I could, and found out about the reality of CDH. I found amazing people and great support with CHERUBS.

Joshua Angel had severe left sided CDH, hydrop fetalis/polyhydramnios, heart failure, and severe pulmonary hypertension. At 29 weeks pregnant I was told that my baby needed to be delivered because of the hydrops worsening. I was transferred to another hospital because the pediatric surgeon was not available at the time. Joshua was born a few hours later and passed away at 12 hours old on March 31st, 2010. I vote every day in memory of our sweet Angel, and for awareness so that other families will know about this wonderful charity; therefore, find accurate information.


I'm voting for my little 5 lb 9oz (so far!) Oz, who's to meet us in July, he was diagnosed March 1st with CDH.

I'm voting for all of the expecting, grieving, and survivor families that have had to listen to the medical community tell you at best your child has a 50% chance of survival. Those of us who face or have faced all of the scrutiny, who ... See Morehave lost the "normalcy" of a pregnancy, who want to be excited going into an ultrasound, but instead are filled with trepidation about what the Drs are going to say next. Who live everyday with hope, but have a flurry of "ifs" and unknowns lingering in the background about what the future holds.

I'm voting because there is not enough known about a condition that affects so many children...a condition with very little research being performed. To promote awareness because so many people have never even heard of CDH or when you try to explain it, they think it sounds "easy enough" to fix.

I'm voting because CHERUBS has been there for these families for 15 years...and for us the day we found out. These people open their hearts, their families, their stories to those of us new to the community. They provide so much for the families - support, the best and most up to date information, tote bags, etc... They have fought legal battles, and manage many fundraisers to promote CDH awareness and support research.


wooohooo!! well said!


I'm voting in honour of our beautiful 9 month old daughter Holly, right sided CDH and ECMO survivor. CHERUBS has given us a place to learn more about CDH and all of the other problems CDH babies have ..... pulmonary hypertension, oxygen dependency, NG feeding, oral aversion to name but a few.


My little girl Anya is due to be induced in 13 days. Cherubs is the only place we could learn anything about previous and current sufferers, and, while terrified, we've been offered a lot of support.


I am voting in honour of my 4 months old darling daughter Deetya who survived Left side CDH. CHERUBS is one place where i got my ABCD's of CDH. Cherubs gives the hope to many mothers like me.


I am voting for our beautiful grandaughter Chloe who was born on the 8th Septembr 2009 but sadly went to be an angel in heaven on the 11th September 2009. Cherubs have given my son and his partner so much support over the past year and we cannot thank them enough. Love and miss you always Chloe xxx


My thoughts and prayers go out to all the families who's children have this!God bless!


Im a survivour of CDH, im nearly 32 now! had 2 wonderful children!!

Wednesday, June 16, 2010

Save the Cherubs & cherub Aaron Younce make the newspaper with the world's first CDH awareness billboard!

We made the paper!  Here is an article posted in the Wilkesboro, NC "The Record"

Local youth on first billboard for CDH campaign

For The Record

Aaron Younce, of North Wilkesboro, is featured on the first ever billboard for the Congenital Diaphragmatic Hernia Association's [CDHA] national awareness campaign, 'Save the Cherubs'. 
And, Wilkes County is the premier site for the billboard presentation.   The electronic sign which rotates images every few seconds, is located on the east bound side of West D Street near Arby's and will remain through June 23.  Billboard space was donated by Lamar Advertising.   Williamson and her husband Craig, members of the Younce family and Severt were on hand as the billboard was first displayed last week.
Younce is depicted on the sign wearing cherub wings, the symbol of 'Save the Cherubs' campaign, which was founded by Dawn Williamson in 1995.   Photos for the campaign were taken by The Record's Missy Severt and are being used on billboards, pamphlets and the CDHA website.
Younce, the son of Carl and Julie Younce, attends Mountain View Elementary School and has lived with the severe disorder since his birth in 1999.  
 "I am so happy to be on the billboard so that lots of people can see it and learn about what CDH is," said Younce.  "I hope it will also help people understand what 'Save the Cherubs' is all about and what it is doing to help others who have it while working to find out why the disorder happens to babies."   
CDH occurs when the diaphragm fails to fully form, allowing the abdominal organs to move into the chest cavity preventing complete and normal lung development and growth.  One in every 2500 babies are born with CDH.
Upon Younce's birth, doctors gave his parents the horrific prognosis that he would not live.  He spent the first three months of his life in the PICU and NICU at Wake Forest Baptist Medical Center where he underwent two major surgeries and numerous other medical procedures to help correct some of the most critical issues.  When his team of specialists determined he had gained enough strength to go home, his family turned their nursery into an in home hospital room equipped with life saving oxygen, heart monitors, suction machines, feeding pumps and pulse oximeter.  For many years, this was the normal everyday life in the home. 
 With continued medical support, family love and God's blessings, Younce gained strength and abilities that enabled him to detach from his highly controlled and monitored lifestyle.  Today he is capable of living without daily oxygen except when he requires extra breathing help during bouts of illness.  However, CDH has left Younce with pulmonary hyperplasia of the left lung, pulmonary hypotension and asthma, making every other illness that he contracts, such as colds or viruses, much more serious and harder to fight.
 CDH, unknown to most, occurs as often as other defects such as Cystic Fibrosis and Spina Bifida.  The goal of the Raleigh based, national CDH CHERUBS non-profit organization is to bring awareness, understanding and hope for families fighting the deadly defect.
 "As a parent of a child with CDH it is so hard to watch your child struggle to just breathe at times," said Aaron's mother Julie. "To sit in the NICU and not know what the next five minutes will hold for your baby is the worst feeling in the world.  Aaron is a little older now and continues to struggle with simple things we so often take for granite like eating and gaining weight. Even with all of his continued problems never one time has he questioned why or why me. He is  going out there and telling anyone and everyone about CDH and cherubs in order to make them aware of the serious disorder in hopes of one day finding a cause and a cure.  Aaron is a hero to me."
 Younce is looking forward to spending lots of time swimming and learning about the art of clay sculpture during his summer break.  He is excited to enter the fourth grade in the fall and see all of his old friends while making new ones at school.
For more information on CDHA and 'Save the Cherubs' visit

Tuesday, June 15, 2010

2010 NC Zoo Trip on June 26th!

Date:  Saturday, June 26, 2010
Time:  9:30am - 3:30pm
Location:  Asheboro Zoo, Asheboro, NC



NC Zoo -

Zoo Tickets -

We will be there and hope to see you all there. This will be a great event! You can meet other NC CDH families, see the zoo, participate in the Save the Cherubs campaign and more!!!!

ALL members are welcome - expectant, survivors and grieving families!!! Si...blings, cousins, etc are welcome too! There is a lot of walking in the zoo so make sure to wear comfy shoes and bring strollers for the little ones.

If you can make it, please make sure to RSVP by checking "attending" on the event page. If you want to participate in Save the Cherubs, let me know so I can bring enough wings and make sure to have your paperwork with you and signed! :)

We hope to see all of you there!!!! :)

Cheryl Sandoval
NC Survivors Parent Representative

Dawn Williamson
(temporary) NC Grieving Parent Representative
CHERUBS President & Founder

3 CDH Charities, 2 Contests!

It's a busy time on Facebook, there are now 3 CDH charities in 2 contests and all 3 need your help!   This is a quick, free way to help families affected by Congenital Diaphragmatic Hernia!

CHERUBS made it to Phase II in the APX Gives Back contest!!!!!

You can vote by going to

Then click LIKE.
Next click the "Start nominating and voting".  
Click on the blue logo for Eastern charities
Scroll down and find CHERUBS and endorse us! EVERY DAY!  Repost too please! :)

On Friday, we were in 1st place but now in Phase II the votes have been reset so we need to get all the votes we can!!!   We have a chance to win $100,000!!!!  All winnings from this contest will go to CDH Research and CDH Support!!!!!!!! 

Almost 2 weeks ago we told everyone to get ready for the Chase contest to vote for Real Hope for CDH, now the contest has started and we have 2 members of ACDHO in the Chase Community Giving contest!!!!

 Dr. Kays watching over one of his cherubs

Real Hope for CDH in the Chase contest!

Real Hope for CDH, affectionately known as "Kays Kids" is an ACDHO charity that helps fund the research of Dr. David Kays at the University of Florida in Gainesville / SHANDS.   Dr. Kays pioneered the "gentle ventilation" technique of ventilating CDH babies.  He is a wonderful doctor, a great man, a friend of CHERUBS for over 10 years and a saint to every family whose cherubs have been under his care.   All winnings from this contest will go directly to Congenital Diaphragmatic Hernia Research to learn how to better treat babies born with CDH.  To learn more about Real Hope for CDH, you can visit

The Olivia Raine Foundation (another ACDHO organization!) is also in the Chase Contest! 

Olivia Raine Richards

The Olivia Raine Foundation is named in memory of cherub, Olivia Raine Richards.   Her family started this foundation in Michigan to help grieving parents pay for their childrens' funerals.   They are very low on funding right now and can use all the help they can get!   Please vote for them in the contest!  For more info or to make a donation, go to