Dear Mr. Sparks,
Did you know that Congenital Diaphragmatic Hernia is as common as Spina Bifida and Cystic Fibrosis? Everyone knows what Spina Bifida and CF are but few people have heard of CDH.
Our theory is that since CDH isn't a visible birth defect, that awareness for our cause is much harder. When you see someone with Spina Bifida, often they are in a wheel chair. Cystic Fibrosis patients suffer breathing difficulties. Likewise, other well-known medical issues such as Down's Syndrome, Muscular Dystophy, Cerebral Palsy, etc are "visible" medical issues and patients are living billboards of awareness.
CDH babies either survive with most going on to live normal lives (after a few years of major medical issues) or they don't survive infancy. There are few cases in between those scenerios but CDH is different for each patient.
Those who live look "normal" and if you saw them on the street, you would never know anything was wrong with them. And infant death is still not something commonly talked about in society. Our children are not "billboards". It is a blessing for them, a curse for the cause because it's much harder to raise awareness.
Our cause also does not have telethons, a list of celebrity spokespeople, government funding like Spina Bifida and Cystic Fibrosis. CDH only has us moms, dads, grandparents, survivors fighting for every dollar of research funding these kids have. And we are definitely not loud enough on our own. You can see from these charts below that CDH is neglected compared to other causes:
All worthy causes. But CDH babies are fighting without the research funds needed to survive. While CHERUBS is working hard to increase this funding (and numbers have increased the past few years but not by much), it's very hard to convince Congress and NIH to fund things that aren't well known.
So you can see, we need your help. These babies need awareness.
Dawn Torrence Williamson
Frustrated CDH mom