Improving the lives of people with cleidocranial dysplasia

I am Dr. Kelly Wosnik, a nurse practitioner from Mapleton, Utah. I am the only one in my family with Cleidocranial Dysplasia (CCD), which was a random mutation. Having CCD influenced my studies and career choice. I have always been fascinated by the body, genetics, and helping others with emotional or mental health problems. I started by career as an emergency room registered nurse. I did my Master’s thesis on CCD and then went on to obtain a Doctorate in Nursing Practice (DNP) degree. I have been a nurse practitioner for the past 14 years, working in family medicine and mental health. My background in medicine helps me to better understand CCD. I want to share my experience and medical understanding with others.

CCD Smiles Founder Kelly Wosnik with Gaten Matarazzo

I was born in Reedley, California, in 1975. When I was born, it was obvious to my parents and doctors that something was wrong. My body, mostly my head, was shaped differently than a “normal” baby. At 3 months of age, my pediatrician remembered reading about CCD in a medical journal and diagnosed me with Cleidocranial Dysplasia.

I grew up knowing I was different. The most difficult part of CCD was all of the oral surgeries. My baby teeth never fell out on their own, my permanent teeth didn’t grow in on their own, and I had several extra teeth which had to be surgically removed. Everything in my mouth had to be done manually. I started getting teeth pulled, a few at a time, at age 7 and I spent most of my Christmas, Spring, and Summer breaks undergoing surgery. My last major surgery was when I was 19 years old.

Medical insurance and dental insurance did not cover the cost of my surgeries. Medical insurance considered my teeth problems to be dental. Dental insurance considered the surgeries cosmetic. My parents were paying for my surgeries until I was in college.

When I was growing up, I didn’t know anyone with CCD. In 2001, technology helped me to connect with other people with CCD for the first time. I heard about people’s experiences as I conducted phone interviews for my Master’s thesis “CCD: The lived experience.” Eight years ago, I met Steffani and her daughter Hallyy, who have CCD, for the very first time.

I felt inspired to create a nonprofit organization for a long time to help others with CCD. I started working on the foundation in 2013. In 2016, Gaten Matarazzo’s dad contacted me. Together, we made CCD Smiles an official IRS approved nonprofit organization in January 2017.

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