When Illness Becomes Wellness, Part 2

Reflections on the CHOP Pediatric Stroke Conference

This week Michelle Ballasiotes shares her experience at the Pediatric Stroke Conference at the Children’s Hospital of Philadelphia.  Michelle is a prenatal stroke survivor and a You’re the Cure advocate.  You can read about Michelle’s mom, Mary Kay, and her experience at the conference by clicking here.

Hi! My name is Michelle Ballasiotes and I am a prenatal stroke survivor. I just turned 16, so that means it has been more than 16 years since I suffered my stroke.  I have been a You’re the Cure advocate with the American Heart Association for quite a few years.  I started speaking at AHA events when I was just 8 years old! All of that experience helps me when I get invited to speak at other conferences and events.  

On November 10^th, 2013, my mom and I spoke at a pediatric stroke conference at the Children’s Hospital of Philadelphia (CHOP) for families affected by pediatric stroke and teen stroke survivors. My mom talked about advocacy and I told my life story.

I didn’t know what to expect at the CHOP conference, because every conference I attend leaves me feeling different. I left this conference feeling inspired!

The teens and young adults had an afternoon session where we did fun activities with the help of some awesome social workers and teachers of children with brain injuries. A lot of the young adults there suffered strokes as children or teens and they remember what it was like to live life normally. For example, Derek was a football player and he is no longer able to play. He and others sometimes wish they could do some of the things they used to.

This was a different perspective for me. Many of the kids I’ve met before suffered their strokes at or before birth, but these teenagers were different—their lives changed abruptly.

I realized that in a way, their recovery might have been more difficult mine because they remember what life was like before their stroke.  I don’t since I was born having already suffered my stroke. That’s what made me really admire their strength and perseverance.

In the afternoon session we decorated small boxes with symbols of what our stroke has made us today. My stroke has made me more confident and courageous. I’ve come to realize that my stroke happened and there’s nothing I can do to go back in time, so I accept the way things are and make the best of it. I’ve decided that inside the box, I’ll write down on a piece of paper how I felt and the most memorable experience from each place where I get to tell my story.

I felt really welcome at the CHOP conference and enjoyed being able to talk with and relate to the other kids. They even had a cake for me since it was my sixteenth birthday!

Everyone kept talking about Camp Cranium and other really awesome programs in Philadelphia and I’m really bummed that there aren’t many similar programs for physically disabled kids here in North Carolina. Being around such an amazing group made me wish I lived in Philadelphia, but I’ll never forget the fun time I had and all the amazing people I met!

To learn more about other advocates like Michelle join our You’re the Cure network and get involved in our advocacy efforts.  You can sign up by clicking here.

**Many thanks to Michelle Ballasiotes for writing this post!**