Grayson Zgunda

Sophomore Grayson Zgunda Coming Into His Own
Posted on 02/26/2019
Grayson Zgunda

For more on Gavin Wilson's coverage of this story, visit this Grayson Zgunda video link By Gavin Wilson Eagle's Eye Staff Writer


For two weeks in July 2002, nine-month-old infant Grayson Zgunda laid in a hospital bed in Indianapolis at Riley Hospital for Children after having his jaw surgically fixed. Then for more than three weeks in bed at home, his jaw was broken three times a day. Over the next 16 years, he would endure similar painful procedures seven more times at Cincinnati Children’s Hospital. Grayson newborn

His parents, Delta High School’s athletic director Mr. Grant Zgunda and his wife, Becky, raised three older healthy children, but the unknown frightened them when they found out about Grayson’s condition at birth.

He was born with Treacher Collins syndrome, which alters and slows the growth of facial bones. He had to undergo surgery every three years to expand his jaw and enable him to breathe.

Throughout Grayson’s lifetime, he has had more than 30 non-cosmetic surgeries to correct the condition. Finally, those days are behind him.

Through it all he has persevered and is on the path of pursuing his interests -- theatre, dance, and even speeches-- as a 17-year-old.

“In elementary and in middle school, I never wanted to get out there,” Grayson said. “This year I really have gone out of my comfort zone to find new things I really like.”

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Two days after he was born, Grayson was taken to Riley because he wasn’t able to breathe on his own. After nine days, a feeding tube and a trach tube were placed in his throat.

“That was the very first major procedure Grayson had. I just remember the nurse saying ‘Listen to him cry because you’re not going to hear him cry after this,’” Mrs. Zgunda said. “Grant and I both just looked at each other and were like ‘What?’ But when you have a trach, you don’t have vocalization.”

As he aged, Grayson began a speech therapy program, First Steps. He had speech and occupational therapists coming into his home once a week. Once he graduated from the First Steps program, three years after he began, Grayson started another at PrimeTime Pediatrics.

Grayson’s mom said people often think of speech therapy as literally speech. For Grayson’s case, however, it was learning how to eat because he couldn’t eat by mouth until his fifth birthday.

“Anytime we have any surgery with him, literally all the anatomy moves,” Mrs. Zgunda said. “And then he has to relearn how to swallow and chew again -- all the stuff we take for granted.” Hospital bed

Children with Treacher Collins are often born without ears and ear canals; Grayson was no exception. He was fitted for a conduction hearing aid right after birth. However, over the years he began to outgrow it. In 2016, he had a bone-anchored hearing aid surgically implanted. With it, Grayson’s hearing has improved tremendously, according to his mom.

“All the surgeries that Grayson has had through the years have all been about providing him a safe airway. We have told him that all the cosmetic and plastic surgeries are up to him if he decides that is something he wants. Right now, he’s cool in his own skin,” Mrs. Zgunda said. “Grayson could have ears constructed from his own rib cartilage, but he knows they will only be cosmetic. For now, he thinks the painful surgery isn’t worth something that wouldn’t be functional.”

When Grayson began kindergarten at Royerton Elementary School, kids in his class thought he was different until his mom explained to them that everyone is different. For Grayson, though, he sees himself just like everyone else.

“I was just trying to let them know that he might look different but then I said, ‘Hey, we’re all different. Every single one of us was created by God in a different way,’” Mrs. Zgunda said.

During kindergarten, Grayson would become friends with Evan Conley, who would go over to Grayson’s house to hang out.

“Once he started having his major surgeries, I would mainly go to his house and we would play video games or I would spend the night over there, if I was allowed,” Conley said. “(We would just) talk, listen to music and basically just hang out because at that point there were things that he couldn’t hardly do because he didn’t have much energy and he couldn’t eat well.” Card

Standing out to Grayson is the moment during his fifth grade year at Royerton when he was at Riley for three consecutive months recovering from jaw surgery. Conley, his bus buddy, wrote him daily letters, keeping him informed on everything going on at school, which kept Grayson in good spirits.

“There’s just a wave of emotions. Almost one that you would have if a family member was in such a serious situation...,” Conley said. “Only being able to do that in a letter was difficult because you couldn’t face-to-face talk to him so you kind of had to make do with a letter. At that point we couldn’t text, but a letter was the best way we could get to that point of being able to talk to each other and being able to express.”

Despite a lifetime of surgeries, the fears and risks never got easier on Grayson and his parents. His mom said obtaining an airway during a surgery is a “pins and needles moment” because Grayson’s anatomy is different.  In particular, the septum in his nose is not straight and is difficult for doctors to maneuver.

“It is very, very scary for us when he comes out of surgery. Then it’s up to us,” Mrs. Zgunda said. “I can’t tell you how many nights this summer Grant didn’t sleep. Honestly there were several days where he didn’t sleep. I finally said to him ‘You’ve got to get some sleep, Grant. I need you.’ He was that concerned about Grayson and making sure he could breathe okay at night.”

However, now Grayson is 17 and done growing.

“One of the main things about the syndrome is the lower jaw doesn’t grow as the body grows. You and I and everybody else who doesn’t have Treacher Collins, as we grow all of our bones grow with us,” Mr. Zgunda said. “Well, his lower jaw doesn’t grow, so as the rest of his body grows, the jaw lags behind. It’s not really receding, it’s just everything else is getting bigger so it looks like his jaw is receding back. Now that he’s 17 years old, 5’10”, and has a deep voice, he’s pretty much done growing. This is it, he won’t have to have another one (surgery).”

Now a sophomore, Grayson continues to receive support from family and friends, such as sophomores Conley, Jayce Brown and Elijah Thompson.

Both family and friends inspire him to pursue what he loves: reading comic books and playing video games, such as Mario and Super Smash Bros.

“Not only with Grayson but with all our kids, we just want them to do what they want to do. They were told that from a very young age, ‘We’re here to help you achieve your goals,’” Mr. Zgunda said. “Sports were never something he was interested in. I think he played touch football probably because his older brothers were football players and I was the coach. He’s very musically oriented, a great dancer. I mean an unbelievable dancer, and people who have seen him dance know what I’m talking about. He wanted to be involved in something other than athletics.”

Despite all the years of speech therapy, understanding Grayson’s words can he hard at times. He has to take it slow when pronouncing words so others can understand him. This doesn’t dissuade him, however, from his love of giving speeches.

“I really enjoy getting out there and showing myself,” Grayson said.

Grayson’s secret talent: dancing. This past spring and summer, he danced at back-to-back weddings. His mom said he was “definitely cutting it up on the rug, per se, at the wedding.” He dances to whatever he can groove to. Dancing Grayson

“You just gotta see it. It’s just kind of this rhythm. It comes deep down in his toes or something,” Mrs. Zgunda said. “He didn’t get it from his mother, I can tell you that right now.”

Grayson’s love for being himself carries over into theatre. In the Delta Troupers’ recent production of Blithe Spirit, he helped behind the scenes by making a wheel.

In the Troupers’ spring play, Pillow Talk, Grayson will be an extra in a variety of scenes.   

“They (the cast) make me feel like I belong,” Grayson said.

Theatre teacher Mrs. Dawn Raleigh describes Grayson as a great kid, who is dedicated to anything someone throws at him.

“He has gotten more comfortable in his own skin. He has come out of his shell. He’s becoming more confident. He’s becoming more assertive. He takes the lead more in showing more initiative,” Raleigh said. “Before he was like, ‘I’m going to hang back and see what happens.’ But now if we’re playing theatre games, or doing improv, or things like that, Grayson’s hand is always the first one up or he’ll just get up and go.”

Grayson’s commitment continues to rise for theatre. Eventually, he’ll be working behind the camera. Or the light board. Or even acting.

“I think he’s found a place where he can excel or assert himself however he needs to. He can be creative, and goofy, and accepted. That’s always the purpose and goal that we have,” Raleigh said. “Making sure we have a sense of community there. The people there are going to take him with open arms and do what we can do to support him and encourage him.”

In the future, Grayson plans to attend Ball State University. He hopes to major in something related to camera work.

“It’s been a long road, but things are definitely looking up. His mom and I couldn’t be more proud of him,” Mr. Zgunda said. “When that kid walks across the stage here in a couple years to graduate, it’s going to be a special moment for me and his mom.”