Many kids want to grow up to be a superhero. But having one visit you in person is the next best thing. Three years ago, eight-year-old Sutton Banion underwent surgery to remove a tumor from his skull, a rare condition called Langerhans Cell Histiocytosis (LCH). During his hospital stay, a familiar face stopped by—Optimus Prime from The Transformers. Seeing the smile that the larger-than-life hero put on her little hero’s face was something Sutton’s mother Meghan Sedlacek will never forget.
Edge: What were Sutton’s first symptoms?
Meghan: I felt a bump on his head and thought maybe he had fallen. When it didn’t go away after several days, I took him to the doctor. Thinking it could be a cyst, they did an ultrasound, followed by an MRI. It was finally diagnosed by Dr. Mark Puccioni from Midwest Neurosurgery & Spine as LCH.
Edge: What is LCH?
Meghan: Langerhans cells are a type of white blood cell that normally help the body fight infection. In LCH, too many Langerhans cells are produced and build up in certain parts of the body where they can form tumors. The cause of this disease is unknown and occurs in about 1 in 200,000 children.
Edge: What treatment did Sutton receive?
Meghan: Initially he was supposed to have two surgeries: one to remove the tumor, and a second a few weeks later to graft part of his skull from one side to cover up the side with the tumor. But during surgery they decided to do it all at once. It took almost six hours—hours where “walk b faith” and humbling prayer defined me. But Children’s Hospital took such good care of him.
Edge: Sutton, what do you remember about being in the hospital?
Sutton: I was really scared.
Edge: I bet you were! Do you remember when Optimus Prime visited you in the hospital?
Sutton: Yes! It was really cool! He was so tall. I want to see War Machine and Deadpool too. I’ve seen most of the Avengers movies, and Captain America is my favorite.
Edge: Midwest Heroes is the organization that visited Sutton in the hospital. How did you hear about them?
Meghan: Don and Heather Barnhill are wonderful people, and I learned about the organization when I worked with Heather.
Heather Barnhill: We’re a group of friends who want to put a smile on kids’ faces when they’re going through something they shouldn’t have to go through. We make all of the costumes ourselves, mostly from scratch, and have a wide variety, including Disney princesses. We volunteer at fundraising events, visit hospitals, and only accept payment in the form of donations to non-profit organizations. Requests can be filled out on our Facebook page, facebook.com/midwestheroes.
Meghan: I want people to be aware of the Midwest Heroes organization and the work they do in the community, and I want people to be aware of LCH because it’s so rare. We’re so blessed that Sutton has been in good health since his last surgery (July of 2016). He’s our angel baby; thoughtful and caring, and teaches me every day to be a better person. I’m so grateful for that, and so grateful to the Barnhill’s for reaching out and helping in a small way that made a huge impact on us.
Edge: Sutton, now that you’re healthy, what do you like to do?
Sutton: I like playing baseball, basketball, and football, but baseball is my favorite. This summer I built a tree house with my older brother,Thane, and my friend across the street. It took us three months, and we hung out there all summer.
Edge: Are girls allowed in your tree house?
Sutton: (blushes) Yeah, girls are allowed.