Tuesday, July 17, 2012
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).
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.
Tara is the mom to Brandon (7/17/96) born with undiagnosed left side CDH. Brandon was put on ECMO at 8hrs old. During his six weeks in NICU he had two CDH repairs along with a nissen and gtube. He has had a total of six repairs before the age of two, had developmental delays and feeding issues. His feeding tube was removed on his fifth birthday. Currently he is doing well but does have ADHD, some OCD tendencies and still has fine motor issues.
Tara has been a volunteer for CHERUBS for 13 years and has been the Ohio State Representative for 12 years, along with many other volunteer positions. She has held a Ohio CHERUBS Member Picnic every year since 2001, making it one of the largest annual CDH gatherings in the country.
Tara is learning how to be a single mom to a teenager.
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.
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.
Neil Rubenstein has been married since 2003 to his wife, Amy. His CDH survivor (Aidan) was born in June 2010 after being diagnosed at 37 weeks. Aidan had surgery to repair his hernia when he was 4 days old. His surgeon discovered at that time that Aidan had no diaphragm at all, all his organs were in his chest (except for his liver), his heart had been pushed to the left side by his stomach, and he had two spleens (apparently not uncommon). Even with all this, Aidan did not need ECMO and was only in the NICU for 29 days. Aidan had a follow-up procedure at 13 months old to close up an abdominal hernia that his surgeon created to give his organs room to grow once she moved them all back to their proper location in his abdomen.
My name is Melissa Larrison. I am a mom to 3 beautiful children. Jada who is nine, Kaia who is eight, and Hanna Rae Rose who is our CDH angel. I was diagnosed at nineteen weeks and went to OKC to deliver as it was close to family. Hanna’s defect was relatively small and easy to fix. Unfortunately her little body couldn’t get over other complications with her care and she passed away after twenty one days of fighting.
I joined Cherubs in October of 2008 and the amount of support I have received is immeasurable. Cherubs has become part of my family and I am forever grateful for them. I now hold a board position on the parent board. I am the Fundraising Coordinator and the Virginia state representative. Please feel free to contact me for any of your Cherubs needs.
Monday, July 9, 2012
PRESS RELEASE: Painters Association Works Together To Help Local Charity Help Critically Ill Newborns With Congenital Diaphragmatic Hernia (CDH)
FOR IMMEDIATE RELEASE
Painters Association Works Together To Help Local Charity Help Critically Ill Newborns With Congenital Diaphragmatic Hernia (CDH)
WAKE FOREST, NC (July 9, 2012) – On Tuesday, July 10th, members of the Painters Decorators and Contractors of America (PDCA) are donating their services to help Wake Forest based international charity, CHERUBS.
Socaz Painting, Langdon/McKenzie and Hansell painting are donating manpower to completely repaint the upstairs of 152 S. White Street in downtown Wake Forest. Paint supplies are being donated by Sherwin Williams and Glidden professionals. These companies have teamed up to help CHERUBS, a charity that helps families of babies born with Congenital Diaphragmatic Hernia.
CHERUBS moved into its new office space in April but didn't have the funding or volunteers to paint the 6 room office space with a large reception area. With just 1 full-time employee and 2 office volunteers, CHERUBS's staff already had it's hands full helping the over 4000 families that it serves with free support services, funding researching and raising awareness. Though the office was in need of a paint job to sublease offices to help cover rent, it wasn’t something that CHERUBS was able to do.
It was then that Torrance DeLeon stepped in to help. Owner of Socaz Painting, DeLeon knew of CHERUBS through local business networking group, Triangle BNI. Meeting with the president of CHERUBS in her office he saw a need and offered to help, bringing up the charity with the Triangle chapter of the PDCA and telling them about the cause that CHERUBS supports. Fellow business owners Steve Langdon of Langdon/Mckenzie and Phillip Hansell of Hansell painting agreed to help. They approached local paint suppliers of Sherwin Williams and Glidden, who also agreed to help the charity.
“We are so grateful to these amazing gentlemen for donating their time and talent to help our charity and to help revitalize downtown Wake Forest by painting this beautiful old building. We could not have funded this expense ourselves without taking away much needed funding to help support families affected by CDH.” said Dawn Williamson, president and founder of CHERUBS. “By giving of themselves and their time, the Painters Decorators and Contractors of America, Sherwin Williams and Glidden are helping us to help these babies born with CDH.”
CDH is a birth defect of the diaphragm. It occurs when the diaphragm fails to form or to close totally and an 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.
Drop by CHERUBS office on Tuesday, July 10th to learn more about the charity and meet the painting companies who supporting them.
Learn more about the PDCA at www.pdca.org. If you would like to help spread the word about CDH, or to learn more about CHERUBS, please visit www.cdhsupport.org.
Posted by CDHi Admin at 2:19 PM