Dawn created CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Advocacy and Support in 1995.
Dawn is the mom of Shane Torrence (1/28/93-9/11/99), born with left-sided Congenital Diaphragmatic Hernia (CDH) and multiple birth defects. CDH is a devastating birth defect that affects 1 in every 2500 babies. It occurs when the diaphragm fails to fully form, allowing abdominal organs into the chest cavity and preventing lung growth. 50% of babies born with CDH do not survive. The cause is not known.
Immediately after Shane's birth and diagnosis, Dawn searched for a support group for CDH but there were none available that could help her. After spending hundreds of hours in the hospital's medical library and finding support only from parents met at the hospital, Dawn felt a great need for a CDH charity.
With the help of Shane's surgeon and friends made at the hospital, CHERUBS was started. CHERUBS is founded in memory of, and named for all CDH babies that do not survive.
She started CHERUBS at 22 years old with just a typewriter, kitchen table, $100.00 in donations, and 2 members. By 2009 CHERUBS has over 3000 members in 38 countries and is the world's largest and most active CDH organization raising awareness, supporting families and researching CDH.
CHERUBS offers CDH families over 50 services. From newsletters to on-line forums. From international conferences to local picnics. From CDH research studies to researching CDH in medical journals. Now, Dawn is fighting a trademark inhibiting CDH Awareness and has led the way to submit 2 bills to the U.S. Senate to raise CDH Research money and protect all causes from trademarks on awareness. Dawn has spent over a decade compiling every possible service to CDH families and it seems she will not stop until CDH is no more.
For the past 15 years Dawn has dedicated her life to helping families of children born with CDH. Through her own loss of her precious son and other tragedies, she has worked a full-time job and continued to volunteer up to 50 hours a week at CHERUBS. She is the heart and soul of the organization; planning events, fundraising, creating and delivering services, visiting families, running the web site, maintaining the research database and so much more. It is not uncommon for her take calls at 2 in the morning from distraught parents who just received a diagnosis or lost their child. She travels to conferences, paying out of her own pocket the expenses just to reach more families. She gives interviews to the media, has advised television shows about CDH and runs the charity's on-line marketing campaign. When there are not enough donations to pay a bill, she will cover the cost herself, determined to keep CHERUBS free for families. She is the charity's newsletter editor, event planner, mail clerk, secretary, accountant, graphic designer, fundraiser, grant writer, leader. She is the collective global voice of CDH families.
Those who know her personally know she feels very protective over these families and babies. When a trademark was laid upon "Congenital Diaphragmatic Hernia Awareness", it was Dawn who rallied 1000's of families and doctors in the CDH community and who put her own neck on the line to say "CDH Awareness belongs to everyone". We've seen her cry after putting down the phone when talking to a parent who just lost their baby. I've watched her make a dozen calls to make sure that a family had a place to stay at the hospital or to help an overseas family get in touch with a CDH specialist.
She runs CHERUBS from her home to save money. She covers the cost of the phone bill. It is Dawn who is awake at midnight answer 1 of 200 e-mails she receives each day, trying to respond to every family who requests her help. I've watched her determined face making calls for donations and sponsors to try to pull off an event and I've watched her struggle to find new ways to fund services for families.
I know that it must not be easy to do what she does every day and still grieve for her own son. She will immediately correct anyone who says that she runs CHERUBS in memory of Shane or that it is a foundation for him, letting them know in no uncertain terms that CHERUBS was created for all CDH families. She will quickly come to the aid of any CDH parent in need and will quickly correct anyone who tries to harm the CDH community. She's fierce and determined like a mother lioness protecting her cubs when it comes to tackling CDH but her heart and dedication to these families is as soft as it comes. She never puts herself above others and she blushes if anyone tries to compliment all that she's accomplished. She rarely talks about her own story and so shy, she never brags about all she's done. If you ask her, she'll tell she's "just another CDH mom".
I know that she gives up a large part of her time and her life to dedicate herself to this worthy cause. As her husband, I watch her struggle daily with the enormous workload she carries freely upon her shoulders in her determination to make life a little easier for 1000's of families she may never meet. My admiration for what she does and for who Dawn is cannot be put into words. I cannot imagine anyone in this world who works as hard for these babies as Dawn does and no one who deserves to be recognized more.
