Cameron, Age 20
Family Stories
Connecting with families like yours and hearing their stories can help your own family better cope with Hunter syndrome. Below, you will hear from families and gain information and inspiration from them. For more stories from parents, we also invite you to check out the Hunter Parents Community.
Cameron - Age 20
Cameron was diagnosed with Hunter syndrome 16 years ago. Today, he is a student at Dalton State College in Georgia and spends time reading books, writing his blog, and leading a student group at his church. Cameron makes it a priority to help raise awareness about Hunter syndrome.
Pitching in on MPS Awareness Day
“Raising awareness of Hunter syndrome in Dalton is something that needs to be done,” Cameron said. “And if anyone should do it, I should.” So, in recognition of MPS Awareness Day on May 15, 2012, Cameron helped to educate high school students and teachers in the Dalton area about living with Hunter syndrome. He was asked to support MPS Awareness Day at three Dalton high schools.
“It just started off when I did a Facebook event page,” he said. “I wasn’t really planning on doing too much this year, but day after day I started getting messages because people knew we’d done it before. They were asking where the ribbons were, and were we doing anything this year. So I thought I’d make the ribbons.”
In the weeks leading up to MPS Awareness Day, Cameron spent many hours attaching 4000 special ribbons to information cards about Hunter syndrome and MPS awareness. “One school asked for about 1200 ribbons, and another school asked for at least double that,” said Cameron.
His friends and family helped out. In preparing the materials for the three high schools, Cameron said, “My cousin Savannah, she’s the one who’s helping me get all the stuff ready—all the ribbons, all the organizing. My friend Michaela, she’s going with me on the May 15th event at Dalton High School so I don’t have to go there alone. And my friend Kayla, she helped me with all the phone calls and getting everything organized.”
Cameron was specially invited to attend the school event at Dalton High School to hand out the ribbons and information cards at the cafeteria to help educate students and teachers. “They gave me the full lunch period and they set up a booth for me to give out information,” Cameron said.
The information cards about Hunter syndrome were given to Cameron by the Hunter Parents community. His mother is involved with Hunter Parents, a word-of-mouth educational campaign for parents and caregivers to help raise awareness. The community shares educational resources and helps parents and caregivers connect with others affected by Hunter syndrome. (Learn more about Hunter Parents and sign up here.)
While Cameron knows a lot of people at some of the Dalton-area high schools, he was especially thrilled about the opportunity to speak to the students and staff at Dalton High School. “That’s where I know the least people, so it’s the best one for me to go to. It’ll raise the most awareness because people don’t know me as well there.”
Educating others about Hunter syndrome
Living with Hunter syndrome, Cameron has had previous experience educating people about his condition, such as explaining the symptoms to his schoolmates and teachers. “I figured out how to tell them without sort of freaking them out,” Cameron said with a laugh. “Each person you have to tell in a certain way so that they can understand and relate to it.”
Also, during Cameron’s visits to various doctors, some medical students and interns often sit in, so he helps to educate them, too. “There’s always a new one I get to fill in on Hunter syndrome. But some of them surprise me and they know about it, so that’s kind of cool.”
As a young adult, Cameron has a mature perspective on his condition. When people ask him if he would change his diagnosis of Hunter syndrome, he answers, “No, because I wouldn’t be me if I didn’t have it.”
Writing his first book
Educating others about Hunter syndrome has helped Cameron to appreciate the value of different points of view. He is applying this broader perspective in pursuing one of his ambitions, to become a writer. He is currently working on his first book, a mystery-thriller for young adults. “It’s one story that continues from three different people’s points of view. That way you see why each character does something, and also how it looks from the other person’s eyes.” Cameron’s favorite authors are Ridley Pearson, Michael Grant, and J.K. Rowling.
