CDH Survivors

 

 At CHERUBS, we are one big CDH family. Though we wish you had never heard of CDH, we are glad that you found us and we are here for you and will help as much as we can during your journey. Surviving CDH, however, is not the end of the journey. You may still need additional support, and we hope to provide that support to you. You are also uniquely qualified to provide support to other families still struggling with CDH.

 

Ongoing Support for Survivors

  Though you or your child may have survived CDH, you may still require support and assistance. 

Financial Help
Sources of support to turn to for financial help.  Learn More

CHERUBS Family Assistance Fund
CHERUBS new fund to help families with the financial burdens of CDH.  Learn More

Expecting Again?
  We understand how hard it is to expect another baby after having a cherub and all the emotions and worries that go with a new pregnancy.  Learn More

 

Learn How You Can Help

  You are uniquely qualified to provide emotional and physical support to families still affected by CDH.  Here are some ways that you can get involved.

Join CHERUBS
 Membership is free and includes our forums, conferences, get-togethers, newsletters, and more.  Meet over 3000 families and give and receive support

Join Today


Contribute on the CDH Forums
  Our free message board for CDH families.  Come meet other parents, ask questions, learn about the journeys of others and make friends with people who have walked a mile in your shoes.

CDH Forums


Participate in a Research Study

  There are several current CDH research studies that families can participate in by donating blood work or oral swabs.

Identifying Genes Which Cause CDH

Massachusetts General Hospital
Drs. Patricia Donahoe & Lewis Holmes

Contact: Francis High
(617) 726-0828
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Identifying Genes Which Cause CDH

Baylor College of Medicine
Daryl Scott, M.D., Ph.D., Department of Molecular & Human Genetics

One Baylor Plaza, MS BCM225, Houston, TX, 77030, USA
(713) 203-7242
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Genetic Molecular Basis of CDH

Columbia University Medical Center
Drs. Patricia Donahoe & Lewis Holmes

1150 St. Nicholas Ave, New York, NY, 10032
(212) 305-6987
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www.CDHGenetics.com

Fryn's Syndrome

University of California

Contact: Anne Slavotinek (415)
(713) 203-7242

Identifying Genes Which Cause CDH

Emergen Labs, Salt Lake City, UT

Contact: Mary Meade
This email address is being protected from spambots. You need JavaScript enabled to view it.


Adopt a Hospital
  Help to provide information and resources to CDH families at your cherub's hospital.  

Learn More


Share Your Story
  Email us your story and/or photo and be an inspiration to CDH families everywhere.

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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. 

Read more...

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! 

Read more...

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. 

Read more...

 
Join the Angel Club and make a monthly or annual donation in honor or in memory of your cherub.

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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. 

Read more...

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! 

Read more...

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. 

Read more...