Emerald Rain Demor - Fall 2007

Emerald Rain Demor is a 12-year-old seventh grader with dreams of becoming a college professor or having a math-related career. Since she has tested in the top 5 percent in the nation for science, math and reading, those dreams most likely will come true.

And when it comes to school, it comes as no surprise that math and science are two of her favorite subjects. She also studies French, where her name in class is Élisabeth.

Outside of her academic studies, Emerald enjoys painting, especially with watercolors. She has been taking swimming lessons for the past five years and just started karate lessons this fall.

Emerald also likes animé books, spending time with her dog Isis (a 175-pound Irish Wolfhound) and playing the Logical Journey of the Zoobinis, a computer game. She has been playing this game for the past six years and is now playing at the most advanced level.

In her spare time, Emerald also helps her mother at work. Her mom owns a pizza restaurant close by where they live, and Emerald helps decorate, keep supplies stocked and takes people’s orders. She loves working there and has had a chance to meet a lot of people.

She has met a lot of great friends through CCA. She’s been to about five retreats so far. She remembers her first retreat in Washington, DC, with great fondness. It was a turning point in her life. “I had never seen anyone that had Crouzon syndrome before, people who looked like me. I felt like I fit in.” She can’t wait to go to the next retreat, where she can catch up with her friends and make new ones.

Emerald has had seven corrective surgeries so far. She will undergo one more next May or June. Overall, her prognosis is great.

For the most part, people and things really don’t bother her. She says she feels this way because her family provides such strong support. Her mom, dad, and older brother and sisters are there for her no matter what. “They’re not going to let anything happen to me.”

Emerald also has some great advice for other CCA kids: “If you feel like you don’t fit in, just pretend that you already do.” She says this has really worked for her in certain situations. Sending a message to others that you already fit in, that you already belong, changes the way others see you in a situation. “Somehow it happens. You end up fitting in.”

If you would like to share your story with CCA, please send an email to Annie Reeves at areeves@ccakids.com. If your story is chosen, with your permission, we will edit and publish it in the CCA newsletter, on the Web site or use it for public awareness programs. Not all stories will be selected.

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