Peter Dankelson was born 10 weeks early with 10 birth defects as the result of a craniofacial condition called Goldenhar syndrome. When his parents brought him home after being in the NICU for four months, isolation and fear set in … fear of maintaining the medical equipment Peter was hooked to, fear of Peter getting sick. Then Dede, Peter’s mom, found the Children’s Craniofacial Association (CCA) while researching online for support.
“(CCA) offered my husband and I a lifeline of support during one of the scariest times of our lives. It gave me hope … seeing other families and children like us, gave me hope,” Dede of Illinois shared with attendees of The American Legion’s Children & Youth Conference in Indianapolis on Sept. 23.
Peter, now 17, has endured 30 surgeries and he’s been sharing his journey, alongside his mom, with schools since 2013. His story has reached over 25,000 students nationwide.
Peter encourages students to choose kind, embrace diversity and end social isolation. His theme is when given the choice to be right or be kind, choose kind.
“Living with differences mean I can never hide from them. But Goldenhar syndrome is only one chapter; it’s definitely not my entire story,” Peter said to conference attendees. He likes to spend time with family and friends and play the electric guitar. “No one on this planet is protected against disability or disease. Try not to dismiss someone just because they look different.”
The 2012 New York Times best-seller and award-winning book “Wonder” is part of Peter’s journey and presentation as Peter brings the main character of the book, Auggie, to life as a living example of someone with a craniofacial condition. Other CCA kids, like Peter, are also bringing Auggie to life in schools thanks to CCA’s Choose Kind initiative. The American Legion’s Child Welfare Foundation awarded CCA of Dallas with a $32,000 grant last October which enabled CCA to publish and print 5,000 “Wonder” books with their logo on it. These books are then donated or provided to schools at a reduced cost who support the Choose Kind initiative. So far, 20,000 have been printed. The book helps teach children value, empathy and tolerance for people who are different from themselves.
“Thanks to the grant from The American Legion, it’s really helped us get the word out,” said Dede, a CCA board member.
CCA’s website said the Choose Kind initiative gives CCA kids “a positive platform and a tool to talk about their difference confidently, but also is incredibly impactful to students who read the books and hear these presentations. Teachers report that after reading Wonder and participating in a visit or Skype session, students are more outgoing and more patient with each other, and bullying problems get resolved.”
Dede shared with The American Legion that through CCA, she and Peter continue to inspire other families with a craniofacial condition to educate, raise awareness and bring the story of “Wonder” to life in their own community and to get kids excited about their difference.
For more information about CCA’s Choose Kind initiative, visit https://ccakids.org/wonder.html.