MEET OUR VOLUNTEERS - Elizabeth Lopez

Elizabeth Lopez Elizabeth (“Lizz”) was born the youngest of 3 on December 28, 1972 in Burlington, NC. It was immediately obvious that there was something not “right,” since she was dark blue. Four hours later, after being rushed to Chapel Hill, NC to what was then UNC’s Memorial Hospital, under the care of a talented young surgeon who had luckily paid attention in his Pediatric Surgery rotation as a resident, surgery was done to repair the hole in her diaphragm and put all vital organs in their proper places, followed by a 6-week stay in the hospital. Luckily, there were no other complications and Lizz has lived a full and somewhat productive life. Lizz and her husband Juan are the very proud parents of 3 daughters, all born perfectly healthy.  As an adult survivor who has never known anyone else with CDH until finding CHERUBS, she looks forward to bringing hope to parents of survivors and to grieving parents alike.

MEET OUR VOLUNTEERS - Ashley McCafferty

Ashley McCafferty Ashley, mom to 2 wonderful boys Brycen and Logan. My youngest, Logan was diagnosed at 20 weeks gestation with left-sided CDH and was born 10-14-11 at St. Luke’s Hospital in the Texas Medical Center here in Houston. Immediately after birth, Logan was transferred to the Level 3 NICU at Texas Children’s Hospital. While in the NICU Logan was a fighter and amazed everyone on how well he was doing. After 3 weeks in the NICU we were able to bring our sweet baby home without any additional medical problems, machines, or medications! Since coming home Logan has had one other surgery due to a bowel obstruction caused by scar tissue. Logan is a completely happy and healthy little boy that has brought so much joy to our family. I found CHERUBS shortly after my 20 week ultrasound when I first started researching CDH. I am truly grateful for CHERUBS and all the information and support they have provided my family. I am currently a Hospital Angel for Texas Children’s Hospital in Houston.

MEET OUR VOLUNTEERS - Shankari Murali

Shankari Murali

Shankari is mum to my miraculous cherub, Anugrah Murali, born with Left CDH and pectus on 20th January 1999. He was born in a Delhi hospital and his defect was diagnosed at birth.  The pediatrician shifted him immediately to Indraprastha Apollo hospital where he had his repair on the 3rd day of his life. [Given the number of babies born in India, CDH is not strange or unknown among pediatricians. Repairs are undertaken in most large hospitals but eventual outcomes depend on both surgical intervention and post-op care, which was luckily excellent in Anugrah's case.] At two years of age he developed a serious problem of intestinal adhesions and volvulus which required an even more difficult and critical surgery. He was lucky again to have  the same excellent ped. surgeon, Dr BD Dwivedi. He had yet another surgery for inguinal hernia soon after. Since then, he has overcome all the developmental issues and is one happy, healthy young boy.

Shankari lives in Bangalore with her two delightful children Aishwarya and Anugrah and their golfer dad, Murali. She is the India rep. of CHERUBS and works for the government of India.

MEET OUR VOLUNTEERS - Karen Myers

Karen Myers Hello, my name is Karen Myers, and I am the mother to Kaleigh Marie who was born on 30 July 2002. She was born at Wilford Hall Medical Center, in San Antonio TX, after learning at 20 weeks gestation she would be born with a left sided Congenital Diaphragmatic Hernia. She spent 10 days on ECMO and had her CDH repair on her 15th day of life. Unfortunately she passed away when she was 17 days old. I am also the mother to another angel, William Logan, who was stillborn on 26 May 2005, at 27 weeks gestation, due to non-immune hydrops fetalis. After much testing and genetics couseling it was deemed that there was no connection between the CDH and Hydrops. I have 3 other beautiful children. Alec, who is 20 and off at college. Aubrey, who is 9 and going into the 4th grade and Jackson, who will be 4 and starting Pre-K soon. I also have a wonderful husband, Will, who is active duty Army and I am a stay at home mom. We currently reside in Crestview Florida but move when the Military says so. I have been a member of CHERUBS since finding out about Kaleighs CDH and wouldn't be the somewhat sane person I am today with out all of the volunteers love and support over the years as well as all the wonderful parents I have met along the way who journey through this horrible defect together.

MEET OUR VOLUNTEERS - Aubrey Paulsen

Aubrey Paulsen My name is Aubrey Paulsen and I live in Nebraska with my husband Mike and our two sons; Owen, 3 ½ and Christian who will celebrate his 1st birthday in July. At 20 weeks pregnant with Christian we were sent to a high risk doctor for an ultrasound to look for a cleft palate. Owen was born with Pierre Robin Sequence, which is characterized by a small chin and cleft palate. Our baby did not have a cleft palate but was rather diagnosed with a cyst on his lung. Several weeks and ultrasounds later the diagnosed changed to that of CDH and so the journey of our lives began. Christian was born July 18, 2011 at 38 weeks with a very large left sided defect. He was placed on ECMO on day 2 where he remained for 15 days. On September 30, 2011 after 12 weeks in the NICU at The Nebraska Medical Center we brought Christian home. We struggle with weight gain, battle reflux and have some issues due to his anatomy but he has made great improvements with feeding and I predict he will continue to do so. I am new to CHERUBS but am excited to grow into the role of Nebraska State Representative. I believe that for me the only way to make peace with this experience is to support families, raise awareness and advocate for research.

MEET OUR VOLUNTEERS - Darlene Silverman

Darlene Silverman Darlene has been a member of CHERUBS since 1999 and a Board Member and Secretary for the past few years.   She has an A.A. Degree from Montgomery College in Maryland.  She has worked as a Legal Assistant/Secretary since 1974 at numerous law firms whose primary practice was litigation and medical malpractice defense.  She has raised 5 children and has 8 grandchildren (first grandchild born in 1998 with LCDH).

MEET OUR VOLUNTEERS - Molly Echelbarger

Molly Echelbarger Molly is the mom of Joshua Angel (3/30/10 - 3/31/10).  Joshua was born with left-sided CDH. He was diagnosed at 20 weeks gestation. His stomach, intestines, and liver were in his chest. His intestines pushed his heart to the right side. He had heart problems, hydrop fetalis/polyhydromnious (fluid retention in the abdomen) as a result of heart failure, and was born premature.  At birth, he had two cardiac arrests and developed a collapsed lung, or pneumothorax.  Joshua lived for 12 hours. Molly is the California State Representative. She has been married for 9 years. She has two children; Gabriel 7 years old, and Bethany 3 years old.  She studied Social Services and Sociology.  She is currently a stay-at- home mom, and plans to go back to school. She enjoys helping those in need, singing, photography, and doing volunteer work in her community. Molly is a navy wife and stay-at-home mom.

MEET OUR VOLUNTEERS - Tracy Meyer

Tracy Meyer

Tracy Meyer is the proud mother of Lillian Sophia, born on June 7, 2011 at North Shore Long Island Jewish Hospital (Stephen & Alexandra Cohen's Children's Medical Center).  Tracy found out that Lily was diagnosed with left-sided CDH during her 36-week sonogram.  With the love and support that was given to the Meyer family, Lily proved the world that she is a fighter and there is hope. After a successful surgery 3 days after she was born (which was performed laparoscopically), Lily was in the hospital for almost 2 weeks and came home on Father's Day. Known as the “miracle angel,” Lily still amazes everyone to this day how strong of a fighter she is.

Tracy resides on Long Island, New York with her husband, Christopher. She has been a CHERUBS volunteer for New York since June 2012. Tracy has a BS in Accounting and AS in Computer Science and has been working in the accounting field since 2003 working in audit and tax. Whether it’s at the eastern end of Long Island at the wineries or having a get together at home, Tracy loves spending time with friends and family.

MEET OUR VOLUNTEERS - Elaine Moats

Elaine Moats Hello, my name is Elaine. I am a mom to two wonderful girls and wife to Brett. My oldest daughter was born with CDH. She was born in 1992. We did not know about the CDH until she was born thankfully because we would of been told to abort her. They did not expect her to live. That was how it was back then and because of where we were from and the doctors lack of experience with CDH, etc. She had her hernia repaired at one day old, her nissen done at 3 months old, her hole in her heart closed at 1 year old, she was oxygen dependant till age 2 1/2, she was g-tube dependant till age 4 1/2, and she had many developmental delays. She had clear sailing until her bowel obstruction at age 14. She amazes me how far she has come and how much she has had to endure. Kristin graduated High School in 2011 with honors, a member of the National Honor Society and ranked #19 in her class of over 200. Kristin was also on the varsity tennis team, on the varsity cheerleading team, in the top girls choir, and made it to State 2 years singing a solo. Outside of school Kristin loves her dance and clogging classes. All of this with only one functioning lung :) As I write this (2012) Kristin has finished her first year in college and I am happy to say she has excelled in college just like high school. My youngest daughter, Brittany, is just as amazing. I smile when I tell them they both like to make GRAND entrances. Kristin, with her CDH being a surprise and Brittany, with being born 2 months early while we were on vacation in a town of 200. Oh and by the way she was breech and I delivered her naturally in a rest home :) So my claim to fame is having 2 amazing girlies :) I have been lucky enough to be a stay at home mom up until 2 years ago. At that time I joined the work force and became an aide in Special Ed in our local K-3rd grade school. Oh what fun I have had helping these kids. In my spare time I like to read, crochet and watch my family in whatever sports event they are in. CHERUBS has been part of our lives since 1993. I don’t know where I would have been emotionally without CHERUBS. It has been my lifeline for CDH. You have to realize in 1992 there was not all the technology available to connect us all. We have met many wonderful parents here.

MEET OUR VOLUNTEERS - Karol Napers

Karol Napers Karol Napers is the Indiana Representative for CHERUBS and mother of three beautiful blessings, Lexie, Jake and little Cherub Tate.  Tate was born in September of 2011.  His left sided CDH was discovered (through the hand of God) the day before his birth at 40 weeks.  Tate was born at St. Vincent Women's Hospital in Indianapolis, IN which has an amazing CDH team and fabulous NICU staff.  Tate's repair was done on day 6 (her birthday) at Peyton Manning Children's Hospital.  In surgery they discovered his CDH to be more severe than originally thought, as his spleen and intestines were both herniated so his diaphragm is now sporting a Gore-Tex patch.  Tate had Pulmonary Hypertension, an infection and partially collapsed right lung following surgery, Anemia, Acid Reflux and currently ASD.  His ventilator was removed on day 13 and he got to go home just a few days short of one month old!!!   Tate is doing very well and loves playing with big Bro and Sis! Karol is married to Dan Napers, an incredible father and marathon runner who supports CHERUBS through Crowdrise.  Karol has worked as a laboratory assistant since 1999, now working part-time and is a full-time mom, which is her passion.  She loves being outside in nature, trail running, gardening, camping, and inside, cooking and anything that has to do with art, crafts, sewing and home projects.

MEET OUR VOLUNTEERS - Megan Weedon

Megan Weedon My name is Megan Weedon.   I live in Paw Paw, MI with my Husband (Alyssa’s Step dad) and our two sons, Benson (2.5 yrs.) and Caleb (7 months).  My daughter Alyssa was born 7/19/04 with a LCDH.  The hernia was spotted at our 24 weeks ultrasound but officially diagnosed at a 28 week ultrasound.  Alyssa spent 9 weeks in the NICU at Helen DeVos Children’s Hospital in Grand Rapids.  She was put on Veno Venus ECMO 12 hours after Birth and was on ECMO for 5 days.  She was then weaned and taken off and her hernia was repaired.  4 days post op. she was in Respiratory distress and put back on Veno Arterial ECMO.  She spent another 6 days on the machines.  To my knowledge, Alyssa is the only double case at HDCH to date (checked stats December 2012).  Today she is a happy, healthy 8 year old, although we are still battling weight gain issues.  She had a Fundoplication (Nissen and Mic-Key G-tube) placed at 7 months old and we still use her tube today for 3 bolus feeds a day along with working on her oral eating quantities.

MEET OUR VOLUNTEERS - Lisa Thibeau

Lisa Thibeau Lisa is mom to Adam Alexander. Adam was born 8/14/2002 with undiagnosed Right sided CDH. He was born in Hammond, Louisiana and transferred by Life-Flight 4 hours later to Ochsner Hospital. He was stable enough for his repair on day 3 and was on ECMO on day 4. He spent 10 days on ECMO, 23 days on a respirator, and 44 days on Oxygen. He had a fundoplication and a g-tube placed (removed at 13 months), and 2 inguinal hernia repairs before coming home on October 17, 2002. Today he is almost 10 years old, he has interstitial lung disease and asthma. His last surgery was January 2010 to repair a patent ductus arterosis. He loves lego, computers, play station and swimming, he is entering the 5th grade this year! Lisa is also the State Representative for CHERUBS in Louisiana. She is married to Dana Thibeau, they also have two amazing daughters Skylar (14) and Katelyn (6), is a stay at home mom, and all of the children are home schooled. She is active in her local home school group, and Bible Drills.

U.S. House of Representatives Introduces Resolution for CDH Awareness Month

H. Res 144 that was introduced this week in the United States House of Representatives to make April, 2013 "National Congenital Diaphragmatic Hernia Awareness Month" by Rep. Martha Roby (R-AL) and co-sponsored by Rep. George Holding (R-NC).  

A companion bill was passed unanimously in the Senate on March 20, 2013 - S. Res. 85 which was sponsored by Senator Jeff Sessions (R-AL) and co-sponsored by Senator Ben Cardin (D-MD).

Congenital Diaphragmatic Hernia (CDH) affects 1600 babies a year in the United States, taking the lives of 800 children.  CDH occurs when the diaphragm fails to fully form, allowing abdominal organs to enter the chest cavity and preventing lung growth. The cause is unknown.  There is no awareness and very little research funding. 

PRESS RELEASE: On March 26, 2013, U.S. Senators Jeff Sessions (R-AL) and Ben Cardin (D-MD) introduced Senate Resolution 85.

SUMMARY:

Raleigh, NC - CHERUBS, a non-profit organization based in Wake Forest, worked with Senators Jefferson Sessions (R-AL) and Benjamin Cardin (D-MD) to gain national awareness for the birth defect, Congenital Diaphragmatic Hernia, through Senate Resolution 85: A resolution designating April 2013 as “National Congenital Diaphragmatic Hernia Awareness Month”.

Congenital Diaphragmatic Hernia occurs when the diaphragm fails to fully form, allowing abdominal organs to migrate into the chest cavity, and preventing lung growth. It affects 1 in every 2,500 babies, representing approximately 1,600 babies in the United States each year, half of which do not survive.

PRESS RELEASE: Grassroots Parent Group Works With Senator Sessions to Raise Awareness with Unanimous Senate Passing of April, 2013 “Congenital Diaphragmatic Hernia Month” Resolution

FOR IMMEDIATE RELEASE

Media Contact:
Dawn Williamson
919.610.0129
awareness@cdhsupport.org

WAKE FOREST, NC (April 8, 2013) – On March 26, 2013, U.S. Senators Jeff Sessions (R-AL) and Ben Cardin (D-MD) introduced Senate Resolution 85.

U.S. Sen. Jeff Sessions (R-AL), along with his colleague Sen. Ben Cardin (D-MD), issued the following statement on March 22nd after the unanimous approval of Senate Resolution 85, designating April 2013 as Congenital Diaphragmatic Hernia (CDH) Month:

“I am pleased that the Senate has unanimously declared April 2013 as National Congenital Diaphragmatic Hernia Awareness month. By joining together, we can help raise awareness of this serious birth defect. Early detection, good prenatal care, and awareness are vital for the survival, and healthy future, of the children born with this defect.”

On Friday, April 19th, U.S. Senator Jeff Sessions (R-AL) will meet with families affected by Congenital Diaphragmatic Hernia who are participating in a “Parade of Cherubs” in Washington, DC, to raise awareness of the deadly birth defect. Sen. Sessions’ three-year old grandson, Jim Beau, is a CDH survivor. In Jim Beau’s honor, the Senator’s family will take part in the event, and Sen. Sessions is requesting a Congressional Bill for the benefit of Congenital Diaphragmatic Hernia Research.

Families will also meet with members of the House of Representatives on April 18^th, which will be followed by a reception that evening on Capitol Hill to celebrate the passing of the Resolution in the Senate.

“CDH awareness and research is very important and especially to me because my grandson, Jim Beau, was born with CDH in 2009,” said Senator Sessions. “This is a life threatening birth defect that not many people have heard about. Only 50 percent of the babies survive and that number could and should be higher. Research and awareness are key and we are excited that CHERUBS chose to parade in DC this year.” said Senator Sessions at last year’s event in Washington, DC.

CDH occurs when the diaphragm fails to form or to close totally and the opening allows abdominal organs into the chest cavity, inhibiting lung growth. CDH affects approximately one in every 2,500 babies, or about 1,600 babies in the United States each year. It is as common as cystic fibrosis and spina bifida. Roughly 50 percent of babies born with CDH do not survive. The cause is still unknown.

The parade has been organized through CHERUBS, a North-Carolina based grassroots nonprofit organization started by Dawn Williamson whose son, Shane, died in 1999 at the age of six from CDH complications. Children donned in wings will begin the three-mile walk at 11:00 a.m. at the Lincoln Memorial; they will travel past the Washington Monument and the White House, and conclude at the U.S. Capitol Building.

“We are thrilled to have so many survivors and families affected by CDH as well as the medical community come out to support the cause,” said Dawn Williamson, president and founder of CHERUBS. “Not only are we celebrating the passing of this very important Senate Resolution for CDH awareness but our members have been gathering Proclamations from Governors and Mayors around the country as well to help raise awareness on a local level.”

Several other cities across the U.S. are also hosting “Parades of CHERUBS” on the same weekend including, New York, Chicago, Denver, Seattle, Dallas, Peoria, Portland, Salt Lake City, Phoenix, St. Louis and Philadelphia. In addition to the parades, there will be a CDH Baseball Night with the Las Vegas 51’s, a Sky Dive Fundraiser in Shropshire, UK, and both the CN Tower in Toronto, Ontario, Canada and City Hall in Dublin, Ireland, will be lighting up for CDH Awareness. Many families will also be holding fundraisers and awareness events in honor or in memory of their children born with CDH. A virtual Parade of Cherubs has been set up on Facebook and Twitter so people can show their support by uploading photos and videos.

April 19th is recognized as the International Day of Congenital Diaphragmatic Hernia Awareness by families in 60 countries.

Shands for Children at the University of Florida in Gainesville, DHREAMS CDH Genetic Lab at Columbia Presbyterian Hospital, the Congenital Diaphragmatic Hernia (CDH) Genetic Research Study at Massachusetts General, the St. Louis Fetal Care Institute, OSF Saint Francis Medical Center and The Center for Fetal Diagnosis and Treatment at CHOP have all been integral in raising CDH Awareness this year by sponsoring or assisting with Parades of CHERUBS at their respective hospitals.

If you would like to help spread the word, or to learn more about CHERUBS and the upcoming parades, please visit www.cdhawarenessday.org

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Additional Events:

Washington DC – Charity members will meet with members of the U.S. House of Representatives on April 18th with a reception to follow on Capitol Hill to celebrate the Senate victory. A Parade of Cherubs will take place on April 19, 2013, starting at the Lincoln Memorial at 11:00. It is being led by Dawn Williamson, President of CHERUBS and mother to Shane, a non-survivor, and Melissa Larrison, Virginia State Representative and mother to Hanna Larrison, also a non-survivor.

New York City, NY – CHERUBS NY State Representatives, Noel Williams, Mom to Aidan Williams who was born and passed away in 2006, and Tara Zoitos, Mom to Taylor Zoitos, a 10 year old CDH Survivor. On April 19, 2013, we will be hosting a Parade of Cherubs jointly with the Doctor's and Geneticist's with the DHREAMS CDH Research Study at Columbia Presbyterian. Families will be meeting at 1 o'clock in the Winter Garden of NY Children's Hospital where light refreshments will be served while hearing a presentation on CHERUBS and the amazing work being done to support families affected by CDH as well as their efforts to assist funding of CDH Research. The second presentation will be made by Dr. Wendy Chung, Principal Investigator and Dr. Julia Wynn, Genetic Counselor, and Principal Study Coordinator into the DHREAMS CDH Research Study, they will discuss findings they have made and let families know how they can participate in the study. At 3 o'clock we will lead families on a Parade of Cherubs, handing out brochures and raising awareness within the community.

Dallas, TX – The first ever Dallas Awareness Parade of Cherubs will be held on April 20, 2013 at Victory Park. Anyone who has been affected by CDH -  family, friends or anyone else,  who would like to help and join us in spreading awareness are invited to attend. Everyone is welcome! We will meet in front of the ABC television station WFAA located in Victory Park at 11am. It is also the home of the American Airlines Center. We will be walking around Victory Park with our banner, posters, and balloons. We will then have a balloon release in memory of all of our CHERUBS we have lost, our CHERUBS that continue to fight the battle, our future CHERUBS waiting to be born, and in honor of our CHERUBS that have fought a hard battle and made it home. The Parade is being organized by Texas Co-Rep Cassandra Carter, who is a 26 year old survivor.

Philadelphia, PA – CHERUBS is working with the Children’s Hospital of Philadelphia (CHOP) to celebrate International Day of Congenital Diaphragmatic Hernia Awareness on Friday, April 19th, 2013. Karla Holt, the Pennsylvania, New Jersey and Delaware Representative for CHERUBS is organizing the event. Participants will attend a program at the Abramson Research Building beginning at 9:00 am. After the program, participants will walk to the James G. Kaskey Memorial Garden at the University of Pennsylvania for a short ceremony. Everyone is invited to eat lunch together at a local restaurant immediately following the ceremony.

Gainesville, FL – On April 19, 2013, CHERUBS and Shands Hospital for Children at the University of Florida in Gainesville will be hosting the 2013 Gainesville Parade of Cherubs. This parade coincides with the 2013 International Day of Congenital Diaphragmatic Hernia Awareness. Participants will meet in the atrium of the UF & Shands north campus at noon. The parade route extends around the north campus of UF & Shands and down to the Shands Medical Plaza. There will be a short stop at Wilmot Gardens to remember all the CHERUBS who lost their battle with CDH. The parade will end back at the UF & Shands north campus atrium.

The UF Congenital Diaphragmatic Hernia Program will also be sponsoring a patient reunion at Tioga Town Center on April 20th, 2013, from 11am – 3pm. Information and RSVP’s can be found at https://ufandshands.org/events/congenital-diaphragmatic-hernia-cdh-patient-reunion.

Chicago, IL - CHERUBS is working with Ann & Robert H. Lurie Children's Hospital of Chicago to put on the Chicago Parade of Cherubs on April 19th. The Illinois Representative for CHERUBS, Neil Rubenstein, is organizing the Chicago Parade. Starting at 11:00 a.m., participants will take part in a balloon launch at Childerley Park in Wheeling to pay respect to all those CHERUBS lost. Then they will walk 2.5 miles through Wheeling and Buffalo Grove to help raise awareness of CDH. Close to 70 people (from four states) are expected to participate in this awareness & fundraising event.

Join us after the parade at Lou Malnati's in Buffalo Grove for lunch and help us Pack Potbelly's in Wheeling to raise additional money towards CDH research (from 3pm - 6 pm on April 19th as well). 50% of the money raised will stay local and be donated to Lurie Children's Hospital of Chicago.

Denver, CO - The Denver Parade of Cherubs takes place on April 19, 2013, at Sand Creek Park starting at 3:30 pm. The event will start with the reading of the proclamation issued by Governor Hickenlooper and will follow with recognition of the health care professionals in Colorado who lend so much to the conduct and advancement of medical treatment for this congenital defect. A moment of silence will be observed in memory of those CHERUBS who have been lost to CDH. Finally, participants will take part in bubble blowing in memory of our CHERUB Angels, in honor of our cherub Warriors, and in anticipation of those cherubs who will arrive soon. The event was organized by Nicolle Colvin and Jennifer Rodi - the Colorado State Representatives for CHERUBS.

Peoria, IL - The 2013 Peoria Parade of Cherubs will take place on Saturday, April 20th at 2:00 pm at the Glen Oak Park Shelter. This event, in coordination with The Children's Hospital of Illinois at St Francis Medical Center, will reunite our miracles, and their families, with their caregivers. We will gather in the park for pictures and a Parade for awareness, followed by a ceremony of remembrance with a special song and bubbles blown up to the CHERUBS in Heaven. Finally, we will take delight in watching our miracles play together in the park, have a cookie and a visit, and say see you next year.

Kristin Aigner is the Parade Coordinator, CDH Follow Up Clinic RN, NICU RN, and Sister to Christopher, a Cherub in Heaven. Kristin's Mother is also an NICU RN, retired, and was the first ECMO Coordinator for OSF. Kristin grew up knowing exactly where she belonged, with her brother's picture hanging outside her bedroom door, showing her the way. She is honored to care for these children, their families, and to help bring them together on this day.

Seattle, WA - The Seattle Parade of Cherubs takes place on April 19, 2013 and is being organized by CHERUBS Washington State Representative, Christina Stembler, whose son, Hunter Stembler, was born with CDH. Christina invites everyone that has been affected in any way by CDH to take part in the parade.

50% of all local sponsorships, t-shirt sales and donations will go towards CDH Research at Seattle Children's Hospital!

St Louis, MO - The St Louis Parade of Cherubs takes place on April 19, 2013 and is a joint project of CHERUBS and the St. Louis Fetal Care Institute. It will include a walk around the hospital grounds, a presentation, candle lighting, and lighted balloon release.

Portland, OR - Oregon & SW Washington members of CHERUBS will be holding Portland's 2nd "Parade of Cherubs" for the International CDH Awareness Daily Celebration in conjunction with several other cities in the USA & UK on Thursday, April 19th at Legacy Emanuel Hospital in Portland, OR. New this year is also a "CDH Information Fair" open to medical professionals & the general public to learn more about CDH & CHERUBS. The information fair will be from 11:00 am - 1:00 pm in Rooms 1075 & 1077 (just off the Lunchroom) and the parade will be 1:00 pm to 3:00 pm.

The local event is being coordinated by CHERUBS Oregon Co-Reps & Hospital Angels, grandmother Shelly Moore & mother Alicia Gilbert to CDH angel Jayden Gilbert who died in March of 2010 after a 23 day fight against CDH & complications, Andrea Martin whose 13 year old daughter Sarah is a CDH survivor and Jamie Rowan, mother to CDH angel Jacob Rowan, lost at 24 weeks gestation at 33 minutes old.

Phoenix, Arizona - The Phoenix Parade of Cherubs takes place on April 19, 2013 and is being organized by CHERUBS Arizona State Representatives, Stephanie Tolley (who is a CDH survivor), and Somer Ball (mother of CDH survivor Rayanne Ball). Stephanie and Somer invite everyone that has been affected in any way by CDH, to take part in the guest speakers and parade. Meet at St. Joseph’s Hospital 350 West Thomas Rd Phoenix AZ, at 3 pm on the 6th floor, Eldorado room. After we will be meeting at 300 E Indian School Rd Phoenix Arizona 85012 to march in a parade and blow bubbles (please feel free to bring your own bubbles) in Loving Memory of all CHERUBS lost and in celebration of CDH Warriors and the awareness that they share on a Daily basis.

Salt Lake City, UT – The Salt Lake City Parade of Cherubs takes place on April 19, 2013 and is being organized by CHERUBS Utah State Representative Josh Hensley and wife, Melanie Hensley, whose daughters, Evie and Ally, were born with and taken from them by CDH. The Hensleys invite everyone that has been affected in any way by CDH, to take part in the parade. We are meeting in downtown Salt Lake City on the southeast corner of South Temple and Main Street at 4:00 p.m. We will be walking to the Salt Lake City and County Building and releasing balloons in loving memory of all CHERUBS lost and in celebration of CDH Warriors and the awareness that they share on a daily basis.

Las Vegas, NV – Nevada will recognize CDH Awareness Day on April 19, 2013. In honor of the families touched by this devastating birth defect, an awareness event is being coordinated by CHERUBS Nevada State Representative, Patricia Houle, and a mother of a CDH survivor, Jill Gibson. Come show your support at the Las Vegas 51's home game at Cashman Field at 7:05 p.m.! Tickets are $10 and children under three are free. All proceeds will go towards supporting families of children born with CDH.

United Kingdom – UK CHERUBS Representative Clair Maher, along with two close family friends will be taking part in A Tandum Skydive at The Parachute Centre near Whitchurch in Shropshire UK. In the evening they are organizing for families & supporters across the UK to join us In Lighting up The UK Night in Memory & Celebration of all babies born with CDH. Their aim is to raise as much money as we can for CHERUBS& The Royal Manchester Children Hospital CDH Research fund.

Canada – the CN Tower in Toronto will be lit in blue, yellow , and pink on the evening of April 19th to raise Congenital Diaphragmatic Hernia Awareness.

Ireland – Dublin City Hall will be lit on the evening of April 19th to raise Congenital Diaphragmatic Hernia Awareness.

A Virtual Parade of Cherubs will include 100's of CDH families submitting stories, photos and video over social media. More information can be found at https://www.facebook.com/cdhsupport

Senate Resolution - http://www.govtrack.us/congress/bills/113/sres85

CHERUBS – http://www.cdhawarenessday.org/

MEET OUR VOLUNTEERS - Paula Endres-Roepcke

Paula Endres-Roepcke I am a newlywed mother of four healthy children and one born with LCDH.  At 20 weeks of pregnancy my son, Jacqsuen was diagnosed.  I was told his intestines and liver were in his chest and his heart had been pushed to the right side of chest.  At 20 weeks my son was given 50% chance to survive.  At 35 weeks I was informed his stomach was in his chest and his survival rate was decreased to less than 10%.  Jacqsuen was born on February 15, 2008 and was placed on ECMO at 2 days old.  He spent 28 days on ECMO and then had repair surgery and Gore –Tex patch placement.  At 6 weeks he had g tube placement surgery and stayed in the NICU until 3 months old.  He came home with oxygen, monitors and a mic key button.   He has been diagnosed with severe acid reflux, constipation, chronic asthma, chronic bronchitis, pulmonary hypertension and bronchial dysplasia.  The past four years he has had illnesses requiring hospital stays but no other surgeries.   He had his Mic-Key button removed at 4 years old and is still learning to eat and takes most of his nutrients by bottle.  Although Jacqsuen spends most of his time indoors he doesn’t complain.   The biggest challenge right now is keeping weight on him.  I am an unemployed paralegal but I have an online bakery.  My bakery is called A Different Kind of Bakery because I make sugar free and lactose free goodies.  I have two children lactose intolerant and Jacqsuen is not allowed a diet high in sugar or cholesterol.  I am new to CHERUBS but I look forward to being the state rep for Iowa and getting to know the families in my state.  I hope to be able to help and support them as much as I have from everyone at CHERUBS.

MEET OUR VOLUNTEERS - Michelle Rogers

Michelle Rogers

Shelly is the mom of Jaxon Thomas Rogers, born July 17, 2009 at 38weeks 4 days with a left-sided CDH. He spent 20 days in the NICU at Riley Hospital for Children in Indianapolis, Indiana. He had surgery to repair his hernia when he was 4 days old, his stomach, small and large intestines and his spleen were upand they were able to do the repair without using a Gortex patch. During his surgery his surgeon discovered that his organs that were up were inside, as he put it a bubble, and we were told is rare and possibly was the reason for the minimal damage to his left lung. Jaxon was on an oscillating ventilator for 6 days, a regular ventilator for 5 days and cannula oxygen for another 9 days. He was released to go home with no medicine, no feeding tubes and no oxygen. He did develop reflux and was on medicine for that until he was ten months old. He is now a very happy 3 year old little boy. He loves his sisters and to play with his trucks!

Shelly is the Indiana State Rep. for Cherubs. She is married to her wonderful husband Greg, and they have 3 beautiful little girls as well as Jaxon...Emily, Lillie and Abbie. She lives in the small town a little northwest of Indianapolis that she was raised in and her children attend the same school she did as a child. Family is the most important part of her life. Shelly is a stay at home mom to all four of her children and is thankful she is able to do so. She recently decided to go back to college to pursue a degree in nursing, Jaxon's CDH and stay in the NICU are a big part of that decision.. She loves meeting and talking to CDH families to share stories and support. She also loves to read, take pictures, to help with her kid's activities, and really enjoys singing and dancing(though admittedly not well!) with her kids as also.

MEET OUR VOLUNTEERS - Kara Hess

Kara Hess Kara is mom to Adam, LCDH survivor born August 2006.  Other complications from his CDH include Gastric Volvulus (rare abnormal rotation of the stomach of more than 180° that creates a closed loop obstruction), Dysphagia, Hypospadius, reherniation, bowel obstruction, and malrotation of the intestinal tract.  Adam also has Apraxia, a neurological disorder that is characterized by the loss of ability to carry out learned movements,despite having the desire and physical ability to perform the movements.   Kara has been a member of CHERUBS since 2007 and has served on the CHERUBS Executive Board of Directors and Conference Planning Committee.  She is wife to Chuck and is a stay at home mother of two busy boys. Prior to motherhood, Kara worked as a Senior Contracts Specialist for a meeting and conference planning company.  She also worked as a Professional Development Assistant for a child care referral agency. Kara received her Associate of Applied Business degree from Stark State College. She enjoys Thai and Indian dining/cooking, biking, traveling, garage saling, daily coffee time with her mom, and leading a daily women's Bible devotional group.

MEET OUR VOLUNTEERS - deAnn Strother McGilberry

deAnn Strother McGilberry My name is deAnn, 2 of my 3 children were born with CDH. Claude lived 10 days and was diagnosied before birth at 20 weeks. Celie is 6 now and was born undiagnoised. ( Even with high risk ultra sound at 7 months ) She spent a month in NICU, surgery at 3 days. What a fighter , other than her scar you would never no she had such a ruff start. I also have a 10 yr old son Chambers. I have been married to my husband, Darren for 12 yrs. We are actively participating in CDH studies, we never want our children to go through what we have. Having been on both sides of CDH I hope I can be there for other parents who are going through what we did.

MEET OUR VOLUNTEERS - Teresa Meherg

Teresa Meherg

Teresa Meherg, of Fayette, Alabama, is the paternal grandmother of Hunter Easton Mcdonald, born April 13, 2012 with left-sided hernia. After successful surgery Hunter progressed toward recovery until late October when he developed a pocket around his hernia site and developed Pneumonia.

 On October 30, Hunter earned his wings and is now zooming through the heavens with his Cherub friends.

Teresa is also grandmother (Nana) to Spencer age 12, Sara Beth age 6, and Sydney age 4, who all enjoy the long-standing motto at her house: "I can at Nana's".

MEET OUR BOARD - David Baldwin

David Baldwin Dave Baldwin has been a Board Member of Cherubs since July of 2012. Professionally, he is a Director Consultant with Business Network International, an organization that helps business owners and salespeople grow their businesses by word of mouth. Dave is originally from Pennsylvania; he moved to the Raleigh area in 2007. In his spare time, he enjoys reading and blogging.

MEET OUR VOLUNTEERS - Tracy Meats

Tracy Meats Tracy is the mom of Ian Wesley, born April 3, 2004, at 36 weeks old.  He was born with an undiagnosed left-sided CDH.  He spent 53 days in the NICU at Primary Children's Medical Center in Salt Lake City, Utah.  Ian was on ECMO for 7 days and had his CDH repair on day 5.  On day 48, he had left and right inguinal hernia surgeries, along with an undescended left testicle surgery.   He was on a ventilator for 29 days, of which 23 days was an oscillating vent.  He endured many complications including pulmonary hypertension, NG tube feeds, developmental delays, minor oral aversions, hypoplastic left lung, chylothorax,  pneumothorax, anemia, acid reflux, and oxygen dependency.  Ian used oxygen for 546 days.  He currently has abnormal systemic venous drainage above the heart with numerous collateral vessels and an echogenic mass on the heart, all due to ECMO.  Ian loves school and his video games! Tracy is the Wyoming State Representative and Volunteer Coordinator for CHERUBS.  She is married to her loving husband, Chris, and they have 3 other sons besides Ian; Cole, Shane and Toby.  She is an Avon Representative and her full-time job is a stay-at-home mom.  Tracy has a BS in Accounting and has worked as an auditor and tax consultant.  She enjoys volunteering to help CDH families, reading, playing and listening to music, anything crafty, and fishing.

MEET OUR BOARD - Ashley Barry, Vice-President

Ashley Barry, Vice-President Ashley Barry, Treasurer, has been a member of CHERUBS since her daughter Jessica, a CDH survivor, was born in 2005. In addition to serving on the executive board for CHERUBS, she is also active in several committees including the NC event, grant writing, and fundraising committees. Professionally, Ashley works as a scientist researching novel cancer therapeutics. She received both her undergraduate and masters degrees from  UNC- Chapel Hill, where she was also a member of the Varsity Fencing team. Ashley lives in Morrisville, NC with her loving husband Chris, two daughters Jessica and Leah, two cats, and a dog.  She enjoys reading, traveling, crafting, cooking and being active.