Monday, February 29, 2016

Faces of Cerebrocostomandibular Syndrome

Today is Rare Disease Day, a day when all of the orphan diseases can unite and not feel quite so alone.  It's a day to show that while your disease isn't as well-known as others, you are still supported and loved.  And yes, it's celebrated on February 29th on purpose.  :)

In honor of Rare Disease Day, I wanted to share (with their permission, of course!) a little about some of our friends with Cerebrocostomandibular Syndrome.

We are the faces of Cerebrocostomandibular Syndrome.

We are sons.  We like painting, cars, and cartoons.

We fight naps!  We like to build things and knock them down.

We are superheroes!  We love to count, sort shapes, and play with animals.

We are aunts to cute nephews.  We love Bruce Springsteen, chick flix, and the New York Giants.


We are college seniors!  We live on campus, are presidents of organizations, and are finishing bachelors degrees.

We are independent!  We love Chinese food, traveling, and family.

We are college seniors.  We are in plays at school, love to shop, and listen to audiobooks.

We are Taylor Swift fanatics!  We go to concerts, enjoy movies, and...did we mention we love Taylor Swift?!

We are athletes.  We play baseball and bowling and go to hockey games.


We are honors students who participate in Math Counts and Geography Bees.

We are boy scouts who love the outdoors, camping, and riding our bikes.

We are little brothers who wear bow ties, love Dr. Who, and pandas.

We are joyful!  We love dolls, I-Love-You-fingers, and laughing.

We are little hams.  We sing along to Frozen, love dress-up, and dance like nobody's watching!

We are sisters.  We love cuddling, being with our families, and enjoying each day as it comes.

We are the Faces of CCMS...and so much more!

Happy Rare Disease Day!

3 comments:

Judi oBrien said...

Julie you are so special and this is a great post! I hope to meet you some day. Emily' grandmother...Judi O'Brien

Raelyn said...

Julie....
I loved seeing all the "faces of Cerebrocostomandibular Syndrome"!! Sons.... Babies.... Daughters.... Athletes.... Honors students.... Boy Scouts.... Brothers.... Sisters.... {Ah, Abby....} Independent, college seniors.... {Hi, Emily....} These kids are all superheroes, indeed!! ;-D
Love you later, Raelyn
PS. I was born with craniosynostosis, {1 out of 2,000} congenital diaphragmatic hernia, {1 out of 2,500} and Wolff-Parkinson-White syndrome {3 in 1,000}.... So I guess this qualifies me as being a part of the Rare Disease Club, too.... ;)

Anonymous said...

Wow I love this thank you and God bless your family. My boy has ccms he is 4 months and he is my joy :)
Oriana173@Hotmail.com