‘Wonder’ Boy

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‘Wonder’ Boy

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When you first look at him, you might think, Why doesn’t that kid have two ears? What’s wrong with his chin?

When people first see junior Peter Dankelson, they may think those things, but they’ll miss  Dankelson’s inspirational story and extremely kind personality.

How I Became to Life

Dankelson was born 10 weeks premature and weighed less than three pounds. He had more than 10 serious birth defects, resulting in a diagnosis of Goldenhar Syndrome, also known as Oculo-Auriculo-Vertebral Syndrome (OAVS). OAVS is a rare birth defect that causes malformations of the eyes, ears and spine. Dankelson required a tracheostomy (a procedure done to repair an obstructed airway) and feeding tube while he spent time in the neonatal intensive care unit (NICU), and this was all in the first four months of his life.

Dankelson has a fake ear, he can’t swim due to his feeding tube, he has an obstructed jaw, and had to learn how to eat and chew following his jaw surgeries.

“Peter’s had 29 surgeries, mostly to stabilize his airway. He had a trach for four years and still has a feeding tube,” said Mrs. Dede Dankelson, Peter’s mom, over email. “His most complex and longest surgery was last June. His jaw was reconstructed in an eight-hour operation that was done by craniofacial, ear, nose and throat physician [ENT], and neurosurgeons.”

Choose Kind

In 2012, author R.J. Palacio wrote a book called “Wonder” about a boy with a facial difference attending school for the first time and trying to be a normal kid. “I think someone must have told [my mom] about the book and she read it, and then she’s like, ‘Oh my gosh, this is really good,’” said Dankelson.

Mrs. Dankelson went on to show the book to the Children’s Craniofacial Association, CCA, which is a national nonprofit organization that addresses “the medical, financial, psychosocial, emotional and educational concerns relating to those with craniofacial conditions,” according to its website.

“[My family and I] are really close with some of the people there, so she [spoke to] the head of the board and decided to promote the book,” said Dankelson.

In 2015 in Santa Monica, California, the town was doing a community wide reading of the book, and the director of the event contacted CCA to ask if they knew any kids who would want to portray the main character, Auggie. They thought Dankelson would be perfect for the job.

Dankelson and his mom flew down to California for this reading, and when Dankelson and his family were in Santa Monica for the play, Palacio was there. They got to talk to her; they then got to see her again a few years later, when she came to Chicago because the city did something with the book as well. So, Dankelson and his mom went down to Chicago with some other families who are a part of the CCA.

In November of last year, they got invited to the red-carpet premiere in Los Angeles of the movie “Wonder,” where they got to meet the actors from the film such as Owen Wilson and Julia Roberts.

While in Santa Monica, “a school asked us to come, so we went in and talked to them. Then when we got back, word got around that we presented and [other schools] asked if I could come present,” said Dankelson.

Dankelson now speaks at schools all around the country about the book and his facial disorder. He recently spoke at LHS during the “Spread the Word to End the Word” in early March.

In the book “Wonder,” one of the themes is to choose kindness: “In his speeches and the way he lives his life, that’s a motto he goes by and conveys to everyone,” said Max Moulton, Dankelson’s peer buddy through the LHS’ Best Buddies club.

Dankelson inspires many around him and his speeches bring a lot of joy to his family, specifically his mom, who loves seeing him speak. “My favorite part of hearing Peter speak is how he uses humor to put people at ease.  He shows his audience there is nothing to be afraid of and that it’s empowering to embrace what makes you different,” said Mrs. Dankelson.

It also brings Dankelson joy to have people understand what he is going through: “I love going to the schools because to me, it is one thing to read about someone’s experience, but when you have someone who relates to that come in and talk to you, it can bring the story to life, and I think that is a really cool thing to have experienced.”

The students at these schools could ask him about bullies or the surgeries, but they often don’t. “They find common interests with him and don’t even realize what they just learned; we are all a lot alike on the inside even though we all look different on the outside,” said Mrs. Dankelson.

During a speech with fourth graders from Carl Junction, Missouri, over Skype last month, the first question asked was about bullying, which Dankelson was ready for and said that he is lucky because he has never been bullied and then told a funny story with a smile. The kids then continued to ask questions about the book and there were constant connections from his life to “Wonder.” In addition, the students asked questions about sports, pets and much more.

His speeches have brought Dankelson many awards as well, such as the 2016 Teen Advocacy Champion of Hope Award from the Global Genes Alliance. He was also a Patient Ambassador for the Children’s Hospital of Michigan from 2010-2015.  He served on their Youth Advisory Council, which helped make decisions on what to promote in the hospital; he also conducted television interviews and spoke at faculty meetings. Additionally, Peter has advocated in Washington D.C. on behalf of the Children’s Hospital Association.

“When your child is born with a facial difference, you spend a lot of time worrying about bullies, staring, and social stigma.  When I see students want to meet Peter and hear his story, it’s the opposite of everything I feared,” said Mrs. Dankelson.

The Performance Space

Another one of Dankelson’s favorite activities is playing the guitar, which he has been playing since freshman year.

Dankelson first got into guitar by listening to more guitar-heavy music, such as rock and roll, instead of pop music. “One day I asked my dad, like, ‘Hey dad, I think I want to start learning guitar,’ and he was like, ‘Oh, I have a guitar in the basement and amp in the basement’ from when he played guitar in high school, so he had some of the stuff from back then, including books of songs. And he kinda showed me how to hold it, how to hold the pick and then I went on YouTube and started to learn songs,” said Dankelson.

Dankelson plays in a band through the School of Rock in Libertyville, where he plays classic rock. According to Mrs. Dankelson she enjoys it because he plays music from her generation, from bands such as AC/DC, Guns n’ Roses, and Led Zepplin.

“I really like his passion when he is playing guitar. He loves talking about playing guitar. You can see him light up when he plays and when you talk about it,” added Moulton

Music has become a vital part of Dankelson’s life. “It brings him an escape because he has so many medical issues that he has to get constant care for, and that takes a physical toll on the body. So guitar provides a way for him to just go into his own world for a little bit,” said Moulton.

Dankelson is also missing muscles in his thumb, so he can’t move it very well. He had to learn to play around it in order to learn a song. He does this in all aspects of his life. Whether it is school, music or speaking, Dankelson doesn’t let his condition get the best of him.

As Dankelson says in many of his speeches, “embrace who you are, keep your head up, and keep walking, and always choose kind.”

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