Monday, February 6, 2012

Cerebrocostomanidbular Syndrome...Number 9


That's how many kids there are with CCMS (that we know of) living in the world today. 

One more was added to our little count today when a mom found me during a Google search.  Her 6 (SIX!!!) year old daughter has CCMS, and she hadn't looked for new CCMS info in a while.  Why should she?  When you're living in Rare Disease World, you know everything there is to know about're the expert. 

But, she was led to do a little search, found me, and sent me an email!  Hooray!!!!

I won't give away personal info about this little girl, but I will tell you one fabulous piece of info:

She plays soccer.

And she takes dance lessons.

Okay, that was two fabulous pieces of info.  But I had to tell you both of them because they are HUGE to us!!! 

Soccer!  Can you imagine Abby running on the field, kicking the soccer ball with her curly brown pig tails bouncing?  It's funny...I never could before, but now I can.  (Okay, I really picture her sitting in the grass picking flowers in the field while the rest of her team kicks the ball around her, but maybe that's just my lack of athletic ability coming out!)

And dance!!  I was a dancer!  I had all but let go of that dream of taking my girl to her first dance class and teaching her how to tap.  But maybe...

And SIX YEARS OLD!!!!!  When you deal with a life-limiting illness, six years old suddenly becomes a long and fulfilling life.  We're thankful for every minute.

So thank you, CCMS Momma, for giving me an extra glimmer of hope today! 

1 comment:

Debbie said...

I do imagine and with each new progressive step you record and share with us, the imagination becomes a reality. And now to hear about this wonderful active 6 yr old, the reality is growing. Continued blessings to you and your wonderful family.