MEET OUR VOLUNTEERS - Karla Holt

Karla Holt Karla is the mom of Braden Holt, born March 13, 2008. Shortly after birth he was diagnosed with a right side congenital diaphragmatic hernia. He was transported via helicopter to the Children's Hospital of Philadelphia. Braden's condition remained stable and he was able to have his diaphragm repair surgery the day after his birth. He recovered quickly and was able to come home on his 12th day of life! To date, Braden has had two other minor procedures. At 13 months he required surgery for an undescended testicle (orchiopexy) and had ear tubes placed in both ears in July 2010. Thanks to a year of in home feeding therapy Braden is now eating us out of house and home! He is a happy and energetic four-year-old who spends his days practicing his ninja moves (karate) and terrorizing his big sister, Brooke (age 8). Karla lives with her family in Bucks County, Pennsylvania (Fountainville) and is the CHERUBS state representative for Pennsylvania, New Jersey, and Delaware. She teaches high school Spanish in the Abington School District and has studied in Seville, Spain. She also has a Master's degree in ESL. She loves running, swimming, and being outdoors with her family.

April 19, 2013 CDH Awareness Day Proclamation - Oregon

Oregon proclaimed April 19, 2013 for CDH Awareness!

Learn how to get a proclamation at http://www.cdhawarenessday.org

*We have requested a correction to "Day of Congenital Diaphragmatic Hernia Awareness"

MEET OUR VOLUNTEERS - Freedom Green

Freedom Green Freedom Green is the mom to Kylee Freedom Green.  Kylee was born October 4, 2000 and passed away on October 5. She was with us for 14 hours. We first learned about our daughters condition at our 18-week ultrasound.  She had Left-Sided Congenital Diaphragmatic Hernia – also known as CDH.   Her stomach, chest, and small portions of her liver, had breached into the upper-chest. Kylee had other congenital anomalies including: multiple heart-defects, two-vessel cord, Trisomy-18, as well as an AV canal defect. After much research, we chose to deliver at St. Luke’s Episcopal Hospital in Houston, TX.  Dr. Brian Kirshon of Houston Perinatal Associates performed an emergency cesarean due to massive polyhydramnios that was restricting Kylee’s growth. As soon as they delivered her she was immediately transferred to the NICU/Neo-Natal team right at the adjoining Texas Children’s Hospital. She passed away peacefully in our arms.  I currently live in Owings Mills, MD with my family. I am married to the most loving, caring and supportive man; my husband Joseph Green. We have 4 wonderfully active children here with us today: Trey ( 9 ), Skyla ( 8 ), Chloe ( 7 ) and Elodie ( 4 ). I work full time as a stay at home mom. I am a marathon runner and love raising awareness / fundraising for CHERUBS through crowdrise ( http://www.crowdrise.com/kylees12thbirthdayba/fundraiser/freedomgreen ) trail running is my passion, hiking, reading, traveling, cooking, and gardening; all with my family. I have been a member of CHERUBS since 2000. My volunteer rolls for CHERUBS are: On –Call for Grieving Families, CHERUBS Parent Advisory Board ( CPAB ), and any other odd jobs which help CHERUBS. CHERUBS is by far the most comforting place we found on our journey down the CDH path. It brings me great joy to be able to help members old and new.

April 19, 2013 CDH Awareness Day Proclamation - Oklahoma

Oklahoma proclaims April 19, 2013 for CDH Awareness!

Learn how to get a proclamation at http://www.cdhawarenessday.org

*We have requested a correction to "Day of Congenital Diaphragmatic Hernia Awareness"

Harlem Shake for CDH Awareness with the Green Family

The Green Family do the Harlem Shake for Congenital Diaphragmatic Hernia Awareness in memory of Kylee Freedom Green!

PLEASE SIGN!  - http://wh.gov/p7gG

If we get 100,000 signatures on the CDH Awareness White House petition within 30 days (by March 9, 2013) then the White House and President Obama will consider lighting up for April 19th for awareness.  http://wh.gov/p7gG

http://www.cdhawarenessday.com

What is Congenital Diaphragmatic Hernia?


CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth.   CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive.  The cause is not known.  Over a half million babies have been born with CDH since 2000.

CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research.  1600 babies are born with CDH every year in the United States.  Globally, a baby is born with CDH every 10 minutes.

CHERUBS is working hard to raise more CDH Awareness, and in turn, more CDH Research, while we continue to support families affected by this devastating birth defect.

Learn more about CDH at http://www.savethecherubs.org

MEET OUR VOLUNTEERS - Josh Hensley

Josh Hensley Josh Hensley is the father of two CDH babies, both of whom grew their wings.  Evie Nanette was born 06/14/2007 with a left-sided CDH at University of Utah hospital and transported to Primary Children's Medical Center.  The initial outlook was promising, but Evie's oxygen levels started failing.  Unfortunately Evie was not a candidate for ECMO because of a small brain hemmorhage.  We said goodbye to Evie, our first child, a short 14 hours after she was born on 06/15/2007. Allyson Belle was born 02/27/2009 at 33 weeks with a left-sided CDH at University of Utah hospital and transported to Primary Children's Medical Center.  Allyson did very well and had her diaphragm repaired 3 days after birth.  While still in the NICU, she had to have a second repair.  We finally got to take her home after 3 1/2 months.  She was on a feeding tube and oxygen almost the entire time.  In February 2010 Ally was back in the hospital for another repair.  During surgery she had a pulmonary hypertensive crisis and spent a month in the PICU.  In June 2010 Ally was discovered unconscious and not breathing in her crib.  Her heart had stopped at some point and she suffered severe brain damage.  She was taken off life support three days later, 06/11/2010. Josh is the CHERUBS Utah Representative as well as serving on several other committees.  Josh works in Law Enforcement and he and his wife Melanie have one other child, Gracie, and reside in Saratoga Springs, Utah.

April 19, 2013 CDH Awareness Day Proclamation - Raleigh, NC

Raleigh, North Carolina proclaims April 19, 2013 for CDH Awareness!

Learn how to get a proclamation at http://www.cdhawarenessday.org

*We have requested a correction to "Day of Congenital Diaphragmatic Hernia Awareness"

MEET OUR VOLUNTEERS - Erin Fisher

Erin Fisher Erin Fisher, mommy to Zoe Aris Fisher born June 3, 2009 with LCDH. Zoe was diagnosed at 20 weeks in utero. Zoe was on ECMO for 30 days and had her repair surgery at 12 days old. Zoe went through 21 different procedures fighting blood infections, liver and kidney failures, bleeding issues, and severe pulmonary hypertension. Zoe spent her life in the PICU of Brenner Children's Hospital in Winston Salem, NC. After 4 months and 3 weeks, October 22, 2009, Zoe passed due to multiple complications with her pulmonary hypertension and renal failure. She passed in the loving arms of her parents. Erin is also the step-mother to Zoe's older brother, Cole and they welcomed a new baby in 2011, Zoe's little sister, Aryah. She is married to her best friend Aaron. She and her family live in Winston Salem, NC. She works at Baptiste Hospital in Winston Salem. Erin found CHERUBS shortly after Zoe's birth and relies on them for support and friendships, and people who just understand. She is the Hospital Angel for Brenner Children's Hospital.

Harlem Shake for CDH Awareness with the Younce Family & Friends

The Younce Family and Friends do the Harlem Shake for Congenital Diaphragmatic Hernia Awareness!

PLEASE SIGN!  - http://wh.gov/p7gG

If we get 100,000 signatures on the CDH Awareness White House petition within 30 days (by March 9, 2013) then the White House and President Obama will consider lighting up for April 19th for awareness.  http://wh.gov/p7gG

http://www.cdhawarenessday.com

What is Congenital Diaphragmatic Hernia?

CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth.   CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive.  The cause is not known.  Over a half million babies have been born with CDH since 2000.

CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research.  1600 babies are born with CDH every year in the United States.  Globally, a baby is born with CDH every 10 minutes.

CHERUBS is working hard to raise more CDH Awareness, and in turn, more CDH Research, while we continue to support families affected by this devastating birth defect.

Learn more about CDH at http://www.savethecherubs.org

April 19, 2013 CDH Awareness Day Proclamation - Boston, MA

Boston, Massachusetts proclaims April 19, 2013 for CDH Awareness thanks to the efforts of the Landers family!

Learn how to get a proclamation at http://www.cdhawarenessday.org

*We have requested a correction to "Day of Congenital Diaphragmatic Hernia Awareness"

Harlem Shake for CDH Awareness with the Napers and Westenhofer Families & Friends

The Napers and Westenhofer Families & Friends do the Harlem Shake for Congenital Diaphragmatic Hernia Awareness!

PLEASE SIGN!  - http://wh.gov/p7gG

If we get 100,000 signatures on the CDH Awareness White House petition within 30 days (by March 9, 2013) then the White House and President Obama will consider lighting up for April 19th for awareness.  http://wh.gov/p7gG

http://www.cdhawarenessday.com

What is Congenital Diaphragmatic Hernia?

CDH occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth.   CDH occurs in 1 of every 2500 births; somewhere in the world, a baby is born with CDH every 10 minutes. 50% of babies diagnosed with CDH do not survive.  The cause is not known.  Over a half million babies have been born with CDH since 2000.

CDH is as common as Spina Bifida and Cystic Fibrosis but there is very little awareness and even less research.  1600 babies are born with CDH every year in the United States.  Globally, a baby is born with CDH every 10 minutes.

CHERUBS is working hard to raise more CDH Awareness, and in turn, more CDH Research, while we continue to support families affected by this devastating birth defect.

Learn more about CDH at http://www.savethecherubs.org

April 19, 2013 CDH Awareness Day Proclamation - Georgi

The state of Georgia proclaims April 19, 2013 for CDH Awareness thanks to the efforts of family and friends of cherub Jessica Barry.

Learn how to get a proclamation at http://www.cdhawarenessday.org

*We have requested a correction to "Day of Congenital Diaphragmatic Hernia Awareness"

MEET OUR VOLUNTEERS - Jennifer Cuomo

Jennifer Cuomo My name is Jennifer Cuomo.  My husband Andrew and I have one daughter, Shay, who was born on August 29, 2011.  We live in Warwick, NY.  I am a school guidance counselor and my husband is a supervisor for Paychex, Inc.  Our daughter Shay was born with a left side CDH.  This was not detected on an ultrasound so we had no idea until the day after she was born.  I was actually the one who noticed that she was having difficulty breathing and asked the doctors to examine her further.  After an xray they diagnosed her CDH and she was immediately flown to Westchester Medical Center in Valhalla, NY.  Shay had surgery 3 days after her arrival to Westchester.  She did so well and healed amazingly fast. She was released from the NICU 6 days after her surgery! The nurses and doctors were shocked by her speedy recovery!  At the time we had never heard of CDH and knowing what we do now, we are so grateful that she is ok and doing so well. Shay is the light of our lives and we feel so blessed every single day.

MEET OUR VOLUNTEERS - Clair Maher

Clair Maher Hi I am Clair Maher, 39, and I live in Manchester England. My daughter Charley was born March 2010 with LCDH. During my pregnancy, Cherubs was my life line & becoming an International Rep is a huge honour. Charley was born at Manchester Children's Hospital where she had her CDH repair & large gortex patch at 5 days old. At 15 days old she had open heart surgery to repair coarctation of the aorta. March 2012, Charley had open heart surgery to remove the band placed on her Pulmonary Artery at birth. During this surgery Charley suffered an acquired Brain Injury which has put her back physically. She is currently NG tube fed awaiting a fundo & g tube. I work full time as a Manageress of a Jewellers. Married to Rodney, we have 3 boys. Niall is 16, a football scholar. Joshua is 8 and Samuel is Josh's identical twin who is our Heavenly baby. I enjoy socializing, DIY, true crime and fundraising . People who know me would describe me as being a genuine Friend.

April 19, 2013 CDH Awareness Day Proclamation - Cleveland

Cleveland, Ohio proclaims April 19, 2013 for CDH Awareness.

Learn how to get a proclamation at http://www.cdhawarenessday.org

*We have requested a correction to "Day of Congenital Diaphragmatic Hernia Awareness"

April 19, 2013 CDH Awareness Day Proclamation - Illinois

Illinois proclaims April 19, 2013 for CDH Awareness thanks to the efforts of the Rubenstein family!

Learn how to get a proclamation at http://www.cdhawarenessday.org

MEET OUR VOLUNTEERS - Christina Smith-Stembler

Christina Smith-Stembler My name is Christina, I am Mother to 4 children. My 3rd child, Hunter was diagnosed with Left side CDH at 20 weeks gestation. Before the diagnosis, I was full of joy that I was having my first Son, after, I was full of worry. Hunter was born in 2008, full term with less than 10% chance of survival, and survived LCDH(Left Sided Congenital Diaphragmatic Hernia), 10 days on ECMO, Initial replacement of missing diaphragm with synthetic NeoPrene patch, Breathing Machines, pulmonary hypertension, Stroke, No Pericardial Sack, RSV, Repair to diaphragm Patch, Bowel Blockage, Bowel Reconstruction, Months of IV antibiotics, Lovenox Shots to dissolve blood clot in heart, Low Weight and Size, Still being fed by G-Tube, (WEEK OF APRIL 13TH, 2012 HUNTER TOOK HIS FIRST FOOD BY MOUTH) Physical, Occupational and Feeding Therapy Daily and through all of this, he looks at me and brightens every room with his smile, he has remained happy and strong, he has even taught me the meaning of the words miracle, strength and humility. Hunter is my hero and stronger in spirit than anyone I have ever known! He is now 4 years old and attends a preschool with other special needs children. He has come so far and I am so proud to be his Mother. Overall, Hunter spent 45 days in NICU, several other hospital stays and approximately 10 surgeries. He has 2 Big Sisters, Danielle 21 (Dating a CDH Survivor), Codee 17, and a baby Brother, Hayden 2. Hunter's condition, in a weird way, has made us stronger as a family (The Stembler Six Pack) and has taught us lessons we will never forget! He is the reason I became Washington State Rep and Oregon Co-Rep for CHERUBS. I wanted other families to know that there is someone here for them, someone that they can depend on and a little boy that can provide some light in the darkness of CDH.

MEET OUR VOLUNTEERS - Jessica Cummings

Jessica Cummings Jessica Cummings is a mom to two beautiful boys, Dominick, 3, and Nathaniel , a CDH angel that grew his wings at 24 days old. Jessica is a Hospital Angel for Pittsburgh, PA. Jessica has been married to her husband, Chris since 2005 and they live north of Pittsburgh, PA. Jessica is a lab technician/ lab manager in a prostate cancer lab at the University of Pittsburgh and Chris is an electrician for a steel mill, Allegheny Ludlum.

CALL TO ACTION - Light the White House for CDH Awareness

CALL TO ACTION - http://wh.gov/p7gG
30 days, 100,000 signatures to light the White House on April 19th for CDH Awareness.

CALL TO ACTION - Light the White House for CDH Awareness

CALL TO ACTION - http://wh.gov/p7gG
30 days, 100,000 signatures to light the White House on April 19th for CDH Awareness.

MEET OUR VOLUNTEERS - Tara Zoitos

Tara Zoitos Tara has been sharing her passion for CHERUBS and all they have to offer as a representative for the state of NY where she presently resides with her husband John, Taylor and their two pups Dexter and Delilah. Taylor Marie was born June 19, 2002 with left sided congenital diaphragmatic hernia diagnosed at her 22 week "well check." Given an extremely poor prognosis and an impending sense of doom she found CHERUBS, where she was provided with the resources, support and education needed throughout her pregnancy, delivery at New York Presbyterian Babies Hospital and for the last ten years. "Cherubs gave me a sense of hope and calm that no one could offer. My dream of being able to pay it forward has been so rewarding and I am so fortunate to have the opportunity.The relationship you form with parents experiencing the same pain, struggles and questions I had ten years ago is mutually transforming — engaging with others that need you is part of God’s redemptive plan." Taylor's diagnosis and the lasting physical and emotional challenges was the catalyst to inspire me to become a pediatric nurse. I am presently furthering my education to encompass a specialty in Respiratory Therapies.

CALL TO ACTION - Light the White House for CDH Awareness

CALL TO ACTION - http://wh.gov/p7gG
30 days, 100,000 signatures to light the White House on April 19th for CDH Awareness.

April 19, 2013 CDH Awareness Day Proclamation - Chicago

Chicago, Illinois proclaims April 19, 2013 for CDH Awareness.

Learn how to get a proclamation at http://www.cdhawarenessday.org

MEET OUR VOLUNTEERS - Nicolle Colvin

Nicolle Colvin Nicolle is the mom of Kasey Colvin 11.16.08-12.19.08. Kasey was born with undiagnosed left sided diaphragmatic hernia. Kasey fought for 33 days, he had severe chylothorax and his lymphatic system wasn’t functioning properly, so he grew his wings on December 19th. Nicolle is the Colorado State Representative for CHERUBS. She is married to her husband Kevin, they are also the proud parents of 2 year old Brooklyn. Nicolle enjoys working out and going to Bronco and Rockies games with her family.

CALL TO ACTION - Light the White House for CDH Awareness

CALL TO ACTION - http://wh.gov/p7gG
30 days, 100,000 signatures to light the White House on April 19th for CDH Awareness.

April 19, 2013 CDH Awareness Day Proclamation - Colorado

Chicago, Illinois proclaims April 19, 2013 for CDH Awareness.

Learn how to get a proclamation at http://www.cdhawarenessday.org

Join us to raise CDH Awareness on April 19th! April 19th Parade of Cherubs in Denver, CO Join us in raising CDH Awareness Join us as we march to raise Congenital Diaphragmatic Hernia Awareness as well as support for the CDH Research Bill. Everyone is welcome to participate. REGISTER FOR THE DENVER TEAM at https://www.firstgiving.com/10125/cdhawarenessday2013 to walk in the parade and create your own page in honor or in memory of your cherub! Donate or sponsor the Denver Parade of Cherubs team at https://www.firstgiving.com/fundraiser/SomerBall/cdhawarenessday2013 50% of all local sponsorships and t-shirt sales and donations will go towards CDH Research at Denver Children's Hospital Contact People - Nicolle Colvin and Jennifer Rodi at colorado@cherubs-cdh.org   When - Friday, April 19, 2013 from 3:00 to 4:30 pm. 3:30 – Arrive at Sand Creek Park (North side of Fitzsimons, east of Peoria Street) Aurora, Colorado (meet, greet, and distribute balloons, cards, and wings) 4:00 – Read the proclamation from the state of Colorado 4:05 – Moment of silence to remember those CHERUBS who have grown their wings 4:10 – First phase of balloon launch for those CHERUBS lost 4:15 – Second phase of balloon launch for those CHERUBS in attendance 4:20 – Third phase of balloon launch for those CHERUBS yet to arrive 4:25 – Photographs 4:30 – End of event and good-byes Where - Sand Creek Park, Aurora, CO Directions to get to the park: a. (Coming from I-70) – Take the Peoria exit and proceed south to Fitzsimons Parkway. Turn left (to the east) on Fitzsimons Parkway and drive approximately ¼ mile. The park is on the north side of the street. b. (Coming from I-225 northbound) – Take the Colfax exit and proceed west to Fitzsimons Parkway. Turn right (to the north) and follow the parkway along for 1.4 miles. The park is on the north side of the street. http://maps.google.com/maps?q=Sand+Creek+Park+-+Aurora%2C+CO&ll=39.757814%2C-104.840555&spn=0.025403%2C0.054846&oe=UTF-8&hq=Sand+Creek+Park+-+Aurora%2C+CO&t=m&z=14 What - we will release balloons. We ask everyone to sing the "CDH Kids Song" (video below) and will ask some to carry Save the Cherubs posters to help raise CDH Awareness. What - we will march to raise awareness Along the parade route we ask everyone to sing the "CDH Kids Song" (video below) and will ask some to carry Save the Cherubs posters to help raise CDH Awareness. Who Can Participate - anyone who wants to raise CDH Awareness. Please register with us to participate! What to Wear: Event t-shirts are for sale. 50% of proceeds will go to the local Children's Hospital CDH Research team. The remaining 50% will go to CHERUBS CDH charity. Order via your registration check out here. Shirts must be ordered by March 31st! Please NOTE - by participating you give CHERUBS full permission to take and use photos in our charity literature, with the media and to raise CDH Awareness in our Save the Cherubs Congenital Diaphragmatic Hernia Awareness campaign! Learn more about CDH and CHERUBS at www.cdhsupport.org. 50% of all local sponsorships, t-shirt sales and donations will go towards CDH Research at Denver Childrens Participate or Sponsor a Parade of Cherubs! https://www.firstgiving.com/10125/cdhawarenessday2013 T-shirt order and sponsorship deadline is March 31, 2013 Parade Participation free   Parade Participation + Adult T-Shirt        $20.00   Parade Participation + Child T-Shirt   $15.00   Blue Cloud Sponsorship $5,000.00   Pink Cloud Sponsorship $1,000.00   Yellow Cloud Sponsorship $500.00   White Cloud Sponsorship $100.00     April 19, 2013 CDH Awareness Day Proclamations and Events as of January 31, 2013.  Visit http://www.cdhwarenessday.org for up-to-date information and to learn how you can get a Proclamation or hold an event! Sign and share the petition to light the White House on April 19th for CDH Awareness! http://wh.gov/p7gG Meet our Colorado State Representatives, Nicolle Colvin and Jennifer Rodi, who re in charge of the Denver Parade of Cherubs.  You can reach them at colorado@cherubs-cdh.org with any questions. The Official 2013 Day of CDH Awareness T-Shirt is now on sale! 50% of local sponsorships and proceeds from the sales of t-shirts will go to CDH Research at Denver Children's Hospital and 50% to CHERUBS. Order your 2013 CDH Day before March 31st to receive in time for April 19th events. More April 19th CDH Awareness Parades: Washington DC New York City Dallas Chicago Philadelphia Seattle Phoenix Portland Denver Gainesville Peoria Salt Lake City Las Vegas Boston Virtual Parade of Cherubs More April 19th CDH Awareness Events: UK CDH Awareness Jump London Marathon Fundraiser CHERUBS Tattoo Fundraiser CDH Awareness Bows Hoosiers Pizza & Subs Fundraiser in honor of Jaxon Rogers Charlie's NC Fundraiser (May, 2013) View a more up-to-date list of events at www.cdhawarenessday.org Hold your own CDH Fundraiser or Event in honor/memory of your cherub with the CDH Fundraising Kit!  It includes 2 posters, balloons, brochures, donor info and instructions on how to hold many simple events! Talk to Melissa Larrison, our Fundraising Coordinator, to get started! Facebook Twitter Website Email Pinterest Google Plus Copyright © 2013 CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Suppot, All rights reserved. unsubscribe from this list    update subscription preferences

CALL TO ACTION - Light the White House for CDH Awareness

CALL TO ACTION - http://wh.gov/p7gG
30 days, 100,000 signatures to light the White House on April 19th for CDH Awareness.

April 19, 2013 CDH Awareness Day Proclamation - North Wilkesboro, North Carolina

Thanks to the efforts of the Younce Family, North Wilkesboro, North Carolina proclaims April 19, 2013 for CDH Awareness.

 

CDH Survivor Aaron Younce with the Mayor of North Wilkesboro, NC

Learn how to get a proclamation at http://www.cdhawarenessday.org

CALL TO ACTION - Light the White House for CDH Awareness

CALL TO ACTION - http://wh.gov/p7gG
30 days, 100,000 signatures to light the White House on April 19th for CDH Awareness.