Casey Evans - Winter 2011

When you meet Casey for the first time, you’ll look at her and say, “What a great kid! What an athlete!” But then you’ll take a second look at her and think to yourself, “There’s something different about that kid.”

Casey was born on August 13, 1996, weighing 8 pounds and 13.5 ounces and measuring 22 inches long. What was supposed to be a joyous occasion turned into a dark, scary moment.

From her first breath, the conversations started. I was told I would get used to having a daughter with disabilities and limitations. She would never amount to anything, she would always be different. I was shocked, confused and scared. My baby had a birth defect that I had never heard of. Why did this happen? How did this happen and what was I supposed to do?

Casey was born with unilateral craniosynostosis. She has under gone two cranial surgeries (and may possibly have a third). The first was at Children’s Hospital in Oakland, CA, at age 6 months. The second, when she was 2 years old, was at Children’s Hospital in Boston, MA (where she is still a case study). Both surgeries lasted an average of 10.5 hours.

After a battery of tests on her father and myself, it was determined that Casey’s condition was not inherited—it just happened—caused by a mutant cell.

Because of her extensive surgeries, she has a severe eye impairment. However, we didn’t know this until she was in kindergarten. She had a hard time focusing and was classified as ADHD. But I didn’t accept that. There was something wrong with her, but it wasn’t ADHD. Luckily my aunt attended a workshop on brain trauma and visual issues, and we found our missing piece of the puzzle.

Casey started working with a neuro-ophthalmologist, who determined she needed to wear special glasses to help her see. She has to wear bifocal glasses with prisms to redirect the information to her brain. When she doesn’t wear her glasses, she sees double vision at a 90 degree angle. (Imagine you’re on a mountain top, looking straight down, while seeing double.) The glasses fix this. No wonder she couldn’t focus!

Her learning has been affected as well. She has severe learning disabilities. She has short-term/longterm memory and cognitive issues; it’s an everyday struggle for her. Needless to say it was a grueling first few years of her life. It seemed we were constantly in and out of doctors’ offices, scheduling followup appointments, getting new glasses and constantly meeting with schools and teachers.

However, one thing never changed: Casey’s cando attitude. Even when children in school would make fun of her and call her names, she always stood her ground.

One day she decided she wanted to play basketball, and it was amazing. When she had the ball in her hand it was like magic. She could maneuver the ball up and down the court and even get it in the basket! It was her second game when her $1,200 glasses were pushed off her face, stepped on and destroyed. Since then, we had a special pair of sport goggles made.

As Casey grew, so did her athletic ability. I couldn’t understand how a child with such learning and visual issues could do what she was doing. She was now not only playing with her seventh grade middle school basketball team, she was also playing with her AAU basketball team and playing with girls in high school. Casey’s nickname on the court was “Goggles.” She then told me she wanted to play lacrosse and later added soccer. I still sit and watch in disbelief.

Casey continually overcomes everyday obstacles with her peers making fun of her at school, for looking and being different. They are soon realizing that “Goggles” is an amazing athlete they can’t stop.

Now at age 14, Casey is a beautiful girl with a winning, go-getter attitude with lots of friends. Her goal is to go to college, play basketball and be a gym teacher. Her advice to all of you out there dealing with similar situations is to “never give up — work hard and make your dreams come true.”

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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