What's Up Wednesday -- Michael

#WhatsUpWednesday is our chance to hear from the teens and young adults who are involved with the Speak Now for Kids community. For Craniosynostosis Month, Speak Now for Kids spoke with 13-year-old Michael from Gillette Children’s Specialty Healthcare.

Michael was born with Apert syndrome, a rare genetic form of craniosynostosis that causes his bones to fuse together. At Gillette Children’s, Michael has undergone cranial-vault surgeries, hand surgeries and foot surgery; he’s also benefitted from dental services and psychological services — all coordinated in one facility. Had it not been for Gillette Children’s, Michael’s condition would be far more restrictive. But thanks to prompt interventions, Michael is living with very few limitations.

Michael has faced his medical condition head on, and has endured many procedures with a positive attitude. He has refused to let his condition slow him down!

So Michael… what’s up?

Why I advocate I like talking about my story, and how kids like me face difficulties every day.

My favorite moment from the 2018 Family Advocacy Day Visiting the House floor with Rep. Nolan.

What my children’s hospital means to me The staff at Gillette Children’s means a lot to me because they provided the care I need to grow.

What I want the world to know about my condition Kids who have Apert syndrome are different than regular kids, but we still function like any other kids.

What makes me unique Definitely my look and my sense of humor. I’m almost always happy and smiling!

What have I overcome Living with a rare condition.

How do I plan to give back to the world I want to help kids like me who are struggling with complex medical conditions.

What do I want to be when I grow up MLB Umpire!

What I’m excited about the most for the upcoming school year Meeting new friends, and catching up with current friends.

Didn’t see Michael’s original Speak Now for Kids Family Advocacy Post? Just click here.

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