over 15 years ago my son was diagnosed with CDH. Back then there was not much available online, but I happened to find CHERUBS... within a couple of weeks I received a packet of information, and those first few years of craziness dealing with a very complex child I had support from all around the country. I have made friends who have been there during the ups and downs these last 15 years, people who KNOW what it is like to deal with such a devastating birth defect that might take your child at any time. He is still with us, despite nearly losing him several times, and I am grateful to know that I am not alone. AND thankfully can share with others that they too are not alone, and perhaps by sharing our stories can also raise awareness for this birth defect, as well as to help other families know what the road ahead might be like so they aren't taken as unaware as those of us in those early days.