Sunday, July 10, 2011

Cerebrocostomandibular Syndrome

I was cleaning out my--ahem--slightly messy office and found the original information we were given about CCMS by our geneticist on Abby's Birth day.  Rereading that ominous report made me shake my head and wonder if the doctors were trying to prepare us for the worst or just scare us.  Honestly, I'm not sure it really prepared us for much.  My own research did that much better than the two page summary did.  But it did succeed in scaring us!

After rereading this I decided to google CCMS, which I do periodically just in case a new miracle drug is created that will put Abby's ribs all back together and make her jaw grow to typical size.  Turns out, that hasn't been created yet.  A girl can dream, right? 

Anyway, I was reading through a bit of research and the common theme in all of the major articles is that early aggressive intervention is a key component in long-term survival.  Because of the rarity of the syndrome, no one really knows the life expectancy.  We do know that statistics say the mortality rate is somewhere between 60-70% within the first year...but we all know how God feels about those statistics, now don't we?!  But with agressive intervention, the outlook is much better! 

I have said this many, many times:  I am thankful for every minute I have with my girl.  I won't get tired of cuddling her or watching her sleep, and I will enjoy playing with her and helping her to live her life to the fullest.  Mark Schultz's song speaks volumes:  "I wanna give her the world, I wanna hold her hand.  I wanna be her mom for as long as I can. And I'm gonna live every moment until that day comes.  I wanna show her what it means to be loved."

That being said, I'm thankful for the aggressive treatment she received.  I think it truly might have saved Abby's life.

5 comments:

Anonymous said...

Hi! My name is Barbie I would love to share some photos and info about our journey with our son Isaac who also has Cerebro costo mandibular syndrome and is now ten years old. It has been a long and difficult road and God has amazingly had his hand in this process with our son .I didn't even realize there were other children alive with this syndrome, I am not very literate when it comes to the internet, I'm just learning how to communicate with email! I am so excited and would love to hear about your road with Abby!

Nichole said...

My son Ty was born and diagnosed with CCMS in May 2010. I came across Abby's story. While I sympathize it's also nice to know we are not alone. I would like to thanks you for sharing her story. My Ty is almost four now and he made it as well. God truly does work in amazing ways. I wish you and your family the very best. Along with any other family and child with CCMS. nikkibrockway123@gmail.com

Anonymous said...

Hi my son has this syndrome he is 2 month old. How is your son doing? I was wondering if you can share with me his journey. If you like we can chat I live you my email oriana173@Hotmail.com
God bless you
Take care

Anonymous said...

Hi my son has this syndrome he is 2 month old. How is your son doing? I was wondering if you can share with me his journey. If you like we can chat I live you my email oriana173@Hotmail.com
God bless you
Take care

Mariama Thorlu-Bangura said...

My name is Mariama Thorlu-Bangura. I have cerebrocostomandibular syndrome. I'm 38 years old, but my life expectancy was listed as 13 years. I have had a variety of surgeries over the course of my life, and now battle with residual pain from those surgeries. Yet, every day I wake up and find a way to get through the day. It's not easy...not at all. But I do it.