Sidney Wilson, a 17-year-old junior in at Hilton Head Island High School, is unique, different and very cool. She was born with Cardiofasciocutaneous Syndrome, or CFC, an extremely rare genetic disorder that affects a broad spectrum of functions.
“There are less than 400 diagnosed cases in the world,” Sidney said, “so I’m in a pretty exclusive club.”
Sidney proudly belongs to another exclusive club: She is a published author, an accomplishment that many people only dream of. Her book, “It’s ‘Cool’ to be Different,” came from a love of reading and a desire “to help others celebrate being different and make them more comfortable,” she said. “There are different kinds of different people,” she added.
“I thought it would be a good idea to write about being different because I’m different. Other kids are called ‘typical,’ but me and a lot of kids are considered special,” Sidney said. “I wanted to write the book to show it is OK to be special or different. I mentioned CFC because I want people to know that it is out there. It’s super rare and makes all of us [CFC] kids pretty unique.”
It wasn’t all easy, though. “The hardest part about writing the book was trying to make it interesting to other people who don’t have a syndrome,” she explained.
Sidney said she did her research for the book at Barnes & Noble and on on a “how-to-write-a-childrens-book” website. “I got the pictures using Google Images and my Aunt Carla helped me with my cat drawing. The cat is the main character and represents me. I chose a cat because that’s my favorite animal.” Her mom, Cathy, helped with the typing, editing and publishing.
Brad Wilson, Sidney’s father, said that it took 12 years to diagnose Sidney’s condition. “We went to doctors all over the country,” he said. It was a DNA analysis that finally solved the puzzle. In June 2018, the Wilson family attended a conference on CFC in Tampa. Sidney got to meet families from all over the world who are in her “exclusive club.’”
“It was an amazing experience,” Brad said. “We got thoughts from other parents, learned about the latest research, and they offered advice for parents. There were so many doctors and psychiatrists who did one-on-one interviews with every single child to learn more about CFC. We look forward to the next conference.”
“Sidney is the sweetest child, so caring for other people. She absolutely adores all animals and really loves our Labradoodle, Riley,” he said. She has a very loving relationship with her brother, Tanner and her sister, Carley.
“If I do write another book, it will probably be about CFC kids and their brothers and sisters who are living with, and growing up with, a special needs kid,” Sidney said. “My brother and sister have been great with me and I am so lucky. They are my heroes!”
Edwina Hoyle is a freelance writer in Bluffton.