Connor Carlisle- Fall 2010

Connor Carlisle just had a birthday in October. The second grader from St. Petersburg, Florida, turned nine years old. To celebrate, he and 20 friends and family members gathered at a bowling alley for an afternoon of fun. As a special request, Connor asked that everyone sing “Happy Birthday” quietly, which they did. Those 20 voices must have sounded so beautiful together.

In lieu of birthday gifts, Connor asked that people make a donation to CCA. They collected $325 total. Thank you so much, Connor, for your generosity!

Connor enjoys school, except for math. P.E. is his favorite “subject.” He loves it when his class gets to play baseball, and he particularly likes hitting the ball. He likes playing basketball during P.E., too. Every spring, Connor plays baseball in a Special Challenger League, and when he can, he goes to see the Tampa Bay Devil Rays play.

He also likes to swim and has a special flotation device that keeps him partway above water, enabling him to use his legs only to swim across this pool. What’s more, Connor is able to go bike riding with his friends. He has an adaptive trike with a basket in the back that holds all his medical equipment.

He’s also really into Legos®. Recently, he and his dad built a vulture droid with the Star Wars Legos. (By the way, Connor and his brother, Reid, are huge Star Wars fans!) Connor has a set of Toy Story Legos he likes to build with as well. Connor is a big Xbox® fan and plays Clone Wars and Republic Heroes, and he likes to play Wall-E on his Wii.

He and his brother like to go to the park, where they’re usually seen climbing up (and swinging from) banyan trees. Connor likes going on all the rides at Magic Kingdom, Epcot and Busch Gardens, too.

One thing’s for certain: He absolutely loves being a Cub Scout, even above his love of sports, and is very excited about becoming a Bear Scout this year. His dad is a Cubmaster, and he and his troop enjoy going camping. When they go camping, they take all of Connor’s medical equipment into the tent and run extension cords for power — where there’s a will, there’s a way!

Connor was born with clover leaf skull, Crouzon’s syndrome and a Chiari malformation. Needless to say, he’s had some very challenging early years. At the moment, he still relies on a ventilator to help him sleep, and he continues with 100 percent g-tube feeding. He has difficulty with gait and balance and tires when walking long distances. Connor got his first hearing aid this summer and has adapted well to it.

Throughout all of this, Connor has remained a delightful boy, an awesome brother and a good friend to his classmates and fellow Scouts. He’s very determined and always ready to go on outings and have adventures — baseball, bike riding, climbing trees and camping, anyone?

Connor and his family went to their first CCA retreat this summer in Boston and had a terrific time. He got to meet other kids going through similar circumstances. Until now, he was the only one he knew who had a g-tube. Hopefully, they’ll be at the retreat next year. We look forward to seeing them again!

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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