As my friends and family that read this blog know, I'm one of the older "kids" out there with CCHS. I feel lucky and blessed because I'm pretty well off, as far as my health goes. Except for the six month period after I was born, I've only been hospitalized once to get my cardiac pacemaker implanted. I've attended school regularly, gone camping (even without a tent) and have traveled on my own. I know for some of those with CCHS, who require constant adult and/or medical supervision, those aren't realistic possibilities.
And while exposure for this condition is good, I'm not so sure if it's the kind of exposure I like. Some within the CCHS network of families have pointed out that Ondine's Curse is an outdated term, yet it's the term most used in The Today Show clip. The boy featured also suffers from a type of unspecified cancer and bowel problems, and The Today Show clip and The Daily Mail article seem to act as if they're medically unrelated to the CCHS. There are certain types of cancer and bowel infections associated with CCHS, as well as dozens of other diseases, disorders, and learning disabilities. I also noticed the medical doctor featured in the clip spends more time talking about the origin of the name Ondine's Curse rather than the actual disease, though that could be poor planning. Finally, The Daily Mail article quotes the doctor saying he couldn't find any other case with these types of symptoms and the child lived. While I was fortunate enough not to have cancer, there are those with CCHS that have had cancer and survived.
The CCHS Family Network is the second Google search result when looking up congenital central hypoventilation syndrome. While I expect very little from British tabloids, I'd think the Today Show could've done a quick Google search and placed a few phone calls to talk to some experts in the field.
I welcome any of those who have CCHS and their families and friends to post in the comments section below if you have anything to add. I am not an ultimate authority on CCHS, and I'd welcome the expertise.
UPDATE: The following was posted by Mary Vanderlaan, founder and director of The CCHS Family Network, in the CCHS Family Network group on Facebook:
We had known this profile was coming. Kenshin in Japan (who is a film maker) had contacted me b/c he saw something else on this child and had seen it as over-dramatized and misleading. The news article too is not completely factual and highlights characteristics of CCHS without giving context. Nor is he the only child who has had the associated cancer or had to struggle with Hirschsprungs. The family said they were going to be careful to have the media present an accurate pciture of the diagnosis. But, then, the media will have last word and editing rights to draw attention and paper buyers, etc. This is the third time I am aware of that a British media (TV or newspaper) featured a CCHS patient in a provocative way that leaves room for readers to misunderstand, feel irrational sympathy for the child, etc. For the media - they're selling papers!