J.R. Foley - Fall 2010

Hi. My name is James Ryan Foley, otherwise known as J.R. I was born May 26, 1990, with a number of medical issues.The one most responsible for most of my medical problems is called craniosynostosis.

First, I had a lot of fluid in my head. To prevent things from getting worse, the doctors decided to place a shunt in my head to help remove the fluid. A shunt is a device like a small pump that moves fluid from the brain area to the stomach. I had to overcome many obstacles with my shunt. It malfunctioned six or seven times, plus I had a couple of infections. I had to go to the OR many times for just my shunt. I also had some big craniofacial surgeries, but I was too young to remember them.

Another issue was the fact that I couldn’t eat by mouth. The doctors placed a tube in my stomach called a g-tube, which helped me get food and nourishment. Another problem was that I had trouble breathing. The doctors performed a tracheotomy to help with that.

In May 2000, I had a big mid-face surgery and had to wear the RED device.This surgery was very tough to go through, but it had a lot of advantages.The biggest one was getting rid of my trach, because I could now breathe on my own.

In 2003, I had heel chord surgeries on both of my feet. I also had a hip surgery in 2006, which didn’t go too well. Then we were struggling with the fact that I couldn’t walk. During this time, my parents noticed that I started to lose the use of my left hand. We went to see a bunch of doctors to try and figure out what was going on. Then I had an MRI, and the doctors noticed a lot of pressure on my brain stem. I had to have spinal fusion surgery in 2008. Since then, I haven’t been able to turn my head very well. I have to turn my body if I want to look at something out of my direct field of vision.

Then in February of last year, I had a second hip surgery, which was successful. All the pain has gone away, but we still don’t see a huge change in my walking. I can’t walk without a walker because there is still pressure on my brain stem, but I can really get around on my power chair.

Over the years, I could not have managed to get through all the surgeries without the help of my parents, Karen and Jimmy Foley. My grandparents, Jane and Paul Scarborough, and my other grandmother, Betty Foley, have also been there to support me.

Recently, I attended CCA’s 20th Annual Cher’s Family Retreat in Cambridge, MA. I had the time of my life and met many new friends. My favorite part of the weekend was the teen night, a time for young adults 13 and over to gather for an evening of fun, dancing and laughter.

Right now I attend Cotting School in Lexington, MA, and can go there until I’m 22. That means I have just two more years to learn new things and try to become more independent. It’s a great school, and I have lots of friends who will be my friends forever.

I love going to see my favorite team, the Boston Red Sox, play. I also love to travel, and my favorite places to go are New York City, where I can see Broadway shows, and Disney World. As much as I love traveling with my family, it’s always fun to go away without them to try out my independence skills. I’ve been on ski trips and weekends away with friends from school, and it feels great when I can do things on my own.

This is going to be a very exciting year for me because I will be going on my senior trip to Disney World. Also, I’m hoping to be elected class President — I’ll keep you posted. And I’m excited that we’re getting an adaptable vehicle, so I can use my power chair more. Most of all, I’m healthy and very blessed to have such a wonderful family and lots of friends.

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.

Toll-Free Hotline

Physician Listing

Qualified Centers

Family Networking

Educational Booklets

Information and Support

Financial Assistance

CCA Newsletter

Cher’s Family Retreat

Public Awareness