Thursday, March 28, 2013

Cerebrocostomandibular Syndrome is NOT a Death Sentence!

I felt compelled to write such a bold title for one simple reason:  it's NOT a death sentence, but all of the research makes it sound like it is.  All of it.  Just check out some of the links on my CCMS page.

I have even found an article (not a medically-based one, mind you) where the author suggests that parents who receive a prenatal diagnosis of CCMS should terminate.  I have written the author to suggest that perhaps he should instead recommend that the parents seek out the best medical care to save their child, but he has yet to change the article.  Maybe I should write him again...

Perhaps you have found my blog and are a parent or loved one of someone with CCMS.  Perhaps, like me, you went straight to the computer right after you got the diagnosis.  I hope that if you learn only one thing, it's that there is always hope.

I'm not naive enough to think that all CCMS stories are as happy as ours is.  But I can tell you that CCMS is not always the death sentence that medical journals make it out to be.  In fact, I have about 10 families who can testify to that statement!  (I've found that the happy stories don't make for such good research articles.)

PLEASE, PLEASE email me if you love someone with CCMS and need some advice and information.  Early, aggressive intervention is KEY to survival.  I truly feel that our push for aggressive treatment is what saved Abby's life.  And if you received a prenatal diagnosis of CCMS, don't believe the lie that your child's life isn't of value.  EVERY life has value....and you will appreciate your child's life even more when you have watched him or her fight for every breath.

CCMS is not a death sentence.  Just look at my girl!


1 comment:

Raelyn said...

Julie....
I am a bit behind on Blogs at the moment, so I'm playing some catch-up!! ;)
I think that you should write that author again. Be a pain-in-the-ass pest!! You never know if by doing so, it could transform and save lives!! ;-D
Great post!! I liked it!! A lot!! ;)
--Raelyn