Chloe’s story: ‘It’s okay to be different’

spinal dysgenesis

In a lot of ways, I’m like any 13-year-old: I like to FaceTime with my friends, play with my younger brother Ethan and our three dogs and post selfies on Instagram. I also play clarinet and love to sew, knit, quilt and make other crafts. But I’m different, too — and I want other kids to know that it’s okay to be different.

I was born with spinal dysgenesis, which means that one of my vertebrae was out of place and pinching my spinal cord. As a result of the surgery to fix it, I have a problem called post-operative paraplegia — I can’t move my legs when I want to. I use a wheelchair to get around most of the time. I think of the chair as being part of me, but it doesn’t define me.

surgery for dislocated hip

Sharing my story

My family and I have been coming to Boston Children’s Hospital since I was a baby. We’ve seen a lot of different doctors and nurses, but Dr. John Emans in the Orthopedic Center performed many of my surgeries. Lately, my appointments are with Dr. Benjamin Shore in the Cerebral Palsy Center. He’s performed the most recent of my 23 surgeries, including a revision to lengthen the adductor muscle in my hip.

All of these operations can make life challenging. After my last surgery, I had to stay still and wasn’t allowed to move very much so I could heal. That got pretty depressing, but luckily my mom was able to take time off from work so she could stay home with me. I also started my own website and really love blogging. It feels good to write down my feelings and help other people by sharing my story.

post-operative paraplegia

Making things fun

Dr. Shore and the other clinicians at Boston Children’s take such good care of me. At this point, my family and I have long-term relationships with a lot of the doctors and nurses. We’ve even made friends with the hotel shuttle driver!

Still, nobody looks forward to going to the hospital. My parents decided a long time ago that if this was going to be our new normal, they were going to make it as positive as possible. Every time we come to Boston from New York, we plan some fun activities before my surgery. We’ve been to the Children’s Museum, Quincy Market and my favorite, the New England Aquarium. We always try to book a hotel with a pool, too. We want to really live it up while we can, so the first part of our trips feels like a vacation. My brother even likes Boston so much that he wants to live here someday.

dislocated hip

A positive attitude

Because I have to stay home until my hip gets better, I have a tutor to help me keep up with schoolwork. I like to say that the doctors help keep my health in good shape and my tutor keeps my brain in shape. No matter what I’m facing, I try to keep a positive attitude. It makes the hard stuff go by faster. I also like make things funny and to keep a good sense of humor. It isn’t always easy, but it works for me. Whatever life hands me, I just keep trying.

Learn about the Cerebral Palsy Center.