Dawn Williamson *
Raleigh, NC – CHERUBS, a non-profit organization founded to not only help parents of children born with CDH, but to lead the medical community in finding the cause and prevention of this devastating birth defect, is working hard to raise Congenital Diaphragmatic Hernia Awareness.
Founded in 1995 by Dawn Torrence, CHERUBS is the world’s largest CDH organization with over 2600 members in 38 different countries and all 50 states. Dawn is the mother of Shane Torrence (1/28/93-9/11/99), born with left-sided CDH and multiple birth defects. Immediately after Shane’s birth, Dawn searched for a support group, but there were none available. After spending hundreds of hours in the hospital’s medical library researching CDH and finding support only from parents she met at the hospital, Dawn felt a great need for a CDH support group.
CHERUBS serves the CDH community without charging parents or medical care providers for it’s services. It receives no grant funding and has no paid employees. Fundraisers help to provide the services that CHERUBS offers, often on a shoe-string budget. Many charities are struggling during this economy and it is especially hard for smaller charities without marketing budgets to compete for media attention to awareness and for research funds. CHERUBS was thrilled when Ms. Pease agreed to become a spokesperson for a cause dear to her heart as well. “Whatever I can do to help will be my pleasure” Pease said.
Ms. Pease’s son was born with Eventration of the Diaphragm, a form of CDH and part of Arthrogryposis. Ms. Pease is well aware of the struggles CDH families face. “My son Russell was born with Arthrogryposis in 1990. He has had 11 surgeries before the age 0f 15. His first was to correct an eventrated diaphragm at 11 hours old. He was given a 10% chance for survival. Part of his multiple contracture and diaphragm problems resulted in Restrictive Lung Disease ( He breathes at 40 % capacity) Despite Russell’s condition he earned a Black Belt in Tae Kwon Do at the age of 12. I was given invaluable advice by one of his surgeons long ago….”Don’t treat him like anything is wrong with him and never do anything for him that he can do for himself”. I watched with tears as he struggled to find his strengths and weaknesses and in turn discovered my own. I thank God for trusting and believing in me to care for my teacher, my inspiration…..my son.”
Eventration of the Diaphragm is a form of CDH that occurs when the weakened muscle of the diaphragm allows organs from the abdominal cavity to move into the chest cavity; but unlike more common types of CDH, the diaphragm remains intact. Arthrogryposis is a rare congenital disorder that is characterized by multiple joint contractures and sometimes includes muscle weakness and fibrosis.
CDH affects 1 in every 2500 babies, representing approximately 1600 babies in the United States each year, half of which do not survive. Some of the other half, like Torrence’s son, who only lived until the age of 6, end up suffering through life with lasting health problems such as feeding aversions, gastrointestinal problems, asthma, allergies, scoliosis, or long-term pulmonary problems. CDH has affected over a half million babies around the world since 2000.
“I wanted to create an organization to help those parents of children with CDH,” said Torrence. “I know exactly how it feels to be going through everything that they have to deal with and have no one to turn to, and I want them to know that CHERUBS is there for them every step of the way.”
There are more children born each year with CDH than there are children born with Cystic Fibrosis, and although there is no known cure or typical treatment, there is still a significant lack of research and awareness in the public and medical communities about CDH.
“There is still so much research that needs to be done,” said Torrence. “CHERUBS wants to be able to help as many families as possible, because we understand the hurt and confusion that comes along with having a child with CDH. We want to spare other families from the devastating effects of CDH so that more babies are lost to this birth defect.
In 2009 this birth defect should not still exist, much less still have so many unanswered questions and so little research. We will keep fighting, keep researching and keep raising awareness until the cause and prevention of CDH is found. We work toward saving babies in the future and honoring those we have already lost.
We plan to work on several projects this year including an educational video on Congenital Diaphragmatic Hernia that will be free to families and hospitals. We also just published a book of stories of these children and are in the midst of planning many events, including our CHERUBS Angel Ball in Durham in October and our 2009 International CDH Conference in San Antonio in July.
We are always so busy at CHERUBS and try so hard to bring more attention to this birth defect. Having Patsy on board is such a Godsend. I look forward to working with her to help raise more awareness so that we can bring more research to CDH and more information and support to these families”.
CHERUBS is an international charity located in North Carolina founded in 1995. CHERUBS serves families of children and adults born with Congenital Diaphragmatic Hernia (CDH). As of January 2009, CHERUBS has over 2600 members in all 50 states and 38 countries. Board Members include the founding father of in-utero surgery, genetic counselors, epidemiologists, pediatric surgeons and parents of children born with CDH. CHERUBS is a volunteer-run organization and a United States Internal Revenue Service recognized 501(c)3 Non-Profit Organization.
About Patsy Pease
Patsy Pease is best known for playing the character of Kimberly Brady Donovan on “Days of Our Lives” from 1990 to 2008. She is one half of the soap’s supercouple of Kim and Shane (played by Charles Shaunnessy). She has also appeared in “Two Shades of Blue” (1999), “Total Reality” (1997), “The Young and the Restless” (1996), “Hardball” (1994), “Silk Stalkings” (1992), “Space Raisers” (1983), “Remington Steele” (1983), “Trapper John, M.D.” (1983), “Search for Tomorrow” (1979-1982). Ms. Pease has won several Soap Opera Digest Awards. She is a strong advocate for raising awareness of child abuse, giving lectures and speeches on her own personal experiences. She has semi-retired to raise her children and to continue her charity work.
*Special thanks to Rachel Wells at 919 Marketing for writing much of this press release.