Our patients’ stories: Casey leaves limitations on the sidelines

by Boston Children's Hospital staff on September 12, 2011

By Christen Evans

Casey as an infant

Our daughter Casey was born on August 13, 1996, weighing 8 pounds and 13 .5 ounces and measuring 22 inches long. It was a smooth delivery, but soon after birth the doctors noticed “something different” about her. In an instant, what was supposed to be a joyous occasion turned into a dark, scary moment.
 
It was soon discovered that Casey had unilateral craniosynostosis, a condition in which the fibrous joints between the plates of the skull fuse too early during a development. From that day forward I was told I would need to get used to having a daughter with disabilities and limitations. People said I should prepare myself for disappointment and that mothering a “different” child was no walk in the park. I was shocked, confused and scared. My baby had a birth defect that I had never heard of. I spent many nights wondering why this happened and what was I supposed to do?
 
It’s been hard, but we haven’t had to do it alone. Since she was born Casey has had many doctors, but her two favorites are the one’s at Children’s Hospital Boston. Over the years Dr. Mulliken, co-director of Children’s Vascular Anomalies Center and Dr. Mark Proctor, her neurosurgeon, have been great sources of support for our family. Without their help I can’t imagine where Casey would be today.

From the beginning, working with Dr. Mulliken, Dr. Proctor and the rest of the Children’s team has been fantastic. When the science and medical terminology explaining Casey’s condition got too confusing Dr. Mulliken and Proctor would explain everything in everyday a language. (It was like putting down a medical encyclopedia and picking up Reader’s Digest article on the same subject!)

Casey is often intrigued by the technology doctor Mulliken and Proctor use, but at times it can be a little overwhelming. Fortunately they’re always quick to put her fears at ease by explaining in detail what to expect. Some of the minor details may slip by us, but thanks to their easy communication the big picture stuff always gets through. At her last appointment she turned to me teary eyed and said, “Mom, their going to make my face look normal.” How can any parent not be thankful after hearing that?

But even with such a strong a medical team backing us up, Casey’s life has been a struggle at times. Because of her extensive surgeries, she has severe eye impairments. However, we didn’t know this until she was in kindergarten. She was originally diagnosed with attention deficit hyper activity disorder (ADHD), but something inside me knew this wasn’t right. Call it mother’s intuition, but I knew there was another reason for Casey’s inability to concentrate at the same level as her classmates. My aunt works with children and around the time Casey was 5  she attended a workshop on brain trauma and visual issues. Half way through the seminar she realized the speaker was describing kids just like Casey and made the connection between Casey’s surgeries and a possible vision problem. Finally, we were getting close to finding a missing piece of the puzzle.

Casey at home

Shortly afterward Casey started working with a neuro-ophthalmologist, who diagnosed her with eyesight issues: left Hypotropia (left eye turned downward) and diplopia, a rare visual condition where a person sees double and at a 90-degree angle. To fix her sight, doctors gave her a pair of custom made bifocal glasses that have specially designed prisms in them to redirect the information to her brain. Once she has her glasses on, she sees everything as you or I would.

In addition to impaired vision, Casey has severe learning disabilities and short-term and long-term memory and cognitive issues. These issues made the first few years of her life very difficult. Barely a day went by that we weren’t constantly in and out of doctors’ offices, scheduling follow-up appointments, getting new glasses and meeting with teachers.

Despite all the uncertainties she’s dealt with, there has been one constant in Casey’s life: her can-do attitude. Even when children in school would make fun of her and call her names, she refused to let her medical condition define her.

The best example of her unflappable spirit is the strength she puts forth on the basketball court. When she has the ball in her hand it’s like magic. The first time I watched her play it was amazing. Here she was, a kid who had to overcome so much just to ride the school bus to school and make it through classes each day, and all the sudden I was watching her maneuver the ball up and down the court. She was even making baskets! It blew me away.

Casey on the court

Of course, having a kid on the basketball team isn’t always a picnic. I remember sitting on the sidelines during her second game and watching in horror as 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, but the proof was right there on the court. Pretty soon she was not only playing with her seventh grade middle school basketball team but also with the local Amateur Athletic Union (AAU) team, right alongside girls several years older than her. And she’s not limiting herself to basketball. Casey’s resume includes lacrosse, soccer and she just made the freshman volleyball team. (Did I mention she has never played before, except for two days of practice?)

Casey today

Now at age 15 and starting high school, Casey is a beautiful girl with a winning, go-getter attitude and lots of friends. Her goal is to go to college, play basketball and be a gym teacher. I know she’ll be a great educator, because she’ll be the perfect role model for her students. Any teacher can give the old, “never give up and always work hard to achieve your dreams,” speech, but coming from Casey those words will take on a whole new meaning. When she says it, it won’t be another rehearsed line; those kids will be witnessing what never giving up really looks like. I for one can’t think of a better way to inspire kids than by being a living example. And I should know, Casey has inspired me since day one.

 
This year marks the seventh year Children’s Craniofacial Association  will observe September as Craniofacial Acceptance Month across the nation. CCA families, friends, volunteers and related support groups will be widening the circle of acceptance for individuals with facial differences. Please visit their website to learn more.

 

2 comments

  • MeljacobY

    What a wonderful story about a beautiful and terrific girl.

  • http://www.texontowel.com Winnie

    Wow. I’m speechless.  I’m grateful for technology that makes her life a little bit easier… she has great parents too!

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