• CHERUBS is now a division of Congenital Diaphragmatic Hernia International
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Congenital Diaphragmatic Hernia foundation CHERUBS was created to help families of babies born with Congenital Diaphragmatic Hernia by providing support services, promoting research and raising awareness in 1995. In 2017, the organization evolved into CDH International and CHERUBS became the family support division of a new, global entity.

Congenital Diaphragmatic Hernia (CDH) is a birth defect that occurs when a baby's diaphragm fails to fully form, allowing abdominal organs to enter the chest cavity and preventing lung growth. CDH occurs in 1 in every 2500 babies, which equals to 1600 babies born each year with CDH in the United States alone. The overall survival rate is 50%. The cause is unknown.

Founded in 1995 by 2 parents, CDH International is the world's oldest and largest non-profit organization for families affected by CDH, serving over 6300 members in 70 countries. By working closely with hospitals and other charities, CDH International has led the way for families for over two decades and fought for awareness, research funding and greatly needed services for all families, at all hospitals, around the world.

We are here to help families at the time of diagnoses, through birth, hospitalization and even after the death of their children. No family has to fight CDH alone. And we will keep fighting until CDH is eradicated.

Our urgent goal:

Eliminate Congenital Diaphragmatic Hernia in our lifetime

and support those already affected.

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WHAT CDH FAMILIES ARE SAYING:

"I can't imagine how we could have managed, or even survived the last 20 years without CHERUBS. I have made life long long friends, who in all honesty are in many ways more like family than my blood relations are. Our children, our CHERUBS families are so dear to us, they hold a special place in our hearts, always."- Heidi Forney

"CHERUBS has brought so many loving people into my life. They understand how I feel. They know what it's like to watch your child fight. They're more then just friends, they're family." - Brandy Hawkins

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"We have truly enjoyed being involved in Cherubs over the years. I have been able to attend two conferences where I met wonderful parents of other CDH kids and made lifelong friends. My favorite memories are of the CDH Awareness walks in DC. There is no other group that does so much to advance the cause of CDH kidsand their families."- Mary Abigail Reinhardt

"CHERUBS has been awesome to support us on our CDH journey! Even though we weren't members until long after our first CDH diagnosis, the support we've received since joining has been amazing. We have been able to connect with so many other families and share our successes and grief. We've also been able to offer support to so many other families. Without CHERUBS our CDH world, and the CDH world in general would be a lot darker!" - Josh Hensley

"The same day that we got the diagnosis that Vivienne had CDH I was was doing research online and discovered CHERUBS. A few weeks later we received the care package, with items donated by parents in honor/memory of their children. A lot of that stuff ended up being very useful, but even more than that, just feeling like part of a community of people who understand what you are going through was really great." - Allison Moore





 

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2017 - News from CHERUBS

CDH Picnic in Peoria, IL, held on 9.16.18

On Sunday, September 16th, CDH International Medical Advisory Board Member, Kristin Aigner, held a CDH family picnic for families in Peoria, IL.  Food and drinks were provided as they celebrated our miracles, whether they are here with us, or watching over us from heaven. 

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Featured Cherub: Taylor Jarecki Steffensmeier

Featured cherub of the week is Taylor Jarecki Steffensmeier.  This young woman continues to beat the odds one breath at a time and continues to bring hope to so many CDH families.  She continues to raise CDH Awareness and is an inspiration to so many of our members.  Here is Taylor’s story in her own words: 

I was born with undiagnosed LCDH in 1991 in a small rural hospital. The doctors noticed something was wrong with me right from the start as I entered the world blue. It was too foggy to be life flighted to the nearest NICU which was two hours away so I was taken by ground. Not even 24 hours old my parents had to make the decision to put me on ECMO. At 5 days old I had my first hernia repair surgery while I was still on ECMO. My hole was about quarter size, which doesn’t sound big in an adult but I was a five pound baby with that size of hole. They used a mesh patch. I was able to come off ECMO shortly after my repair.  One month later I broke out of the NICU and got to go home! 

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3rd Annual Get Your Shine On Golf Tournament Fundraiser

The 3rd Annual “Get Your Shine On” Golf Tournament was held at The Pointe Golf and Event Center in Elk Point, SD on September 8, 2018.  The tournament is held in honor of Rae Ann Davis, daughter of Sydney and Garrett Davis of Burbank, SD.  Rae Ann lost her fight to CDH shortly after she was born due to a large lack of development of her diaphragm along with limited lung development. 

Get Your Shine On was created to honor her memory and serve as a time for fellowship, support and a chance to raise funds to aid in the research of CDH and to support families that have been affected.  This event has continued to grow over the years and has raised over $34,500 in total, including the $14,500 plus from this year alone. Last year a silent auction was added to the event, which is conducted live at the golf event and posted onto Facebook for those unable to attend.  They had 64 golfers take in the day out on the course and numerous supporters who enjoyed the day from the clubhouse patio. 

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