Documentary Provides Glimpse Into Life Of Boy With Rare Disorder

Editor's note: the following story was submitted by Sequoyah High School's Briana Outlaw.

Have you ever wondered what life is like in the eyes of an individual with special needs? An individual who is unable to reach his or her goals independently and requires constant assistance in order to prosper, gain experience, and acquire knowledge about the world?

Callie Cox, a student at Sequoyah High School, created a mini-documentary about a jubilant boy with a disorder known as Crouzon syndrome for her senior project.

Entitled “A Different Documentary,” the 12-minute film chronicles Ethan’s story, a life filled with copious strain, struggle, adaptation, disappointment and in numerous moments, defeat.

According to the U.S. National Library of Medicine, the syndrome is a genetic disorder characterized by the premature fusion of certain skull bones, which prevents normal growth of the skull and affects the shape of the head and face.

Cox’s documentary conveys the message that although Ethan and children that suffer from similar disorders face a number of obstacles, downfalls, and setbacks, they are able to overcome these hardships and inspire others to live life to the fullest.

“I have known this boy for over three years, and I have never seen anyone like him before," Cox said. "Wouldn’t it be so great if I could show people how big he smiles when you play Charlie Brown? Couldn’t I let them hear the excitement in his voice when he’s swinging? Couldn’t I tell his story so people aren’t left wondering what his life must be like?”

Ethan’s life is far from perfect, but documentary shows that Ethan, although plagued with the difficulties that come with the genetic disorder, is just like everyone else. While he has bad days and can get frustrated, he continues to strive towards his goals and aspirations.

Like many of us, he also takes the time to stop and admire the good things in life. Ethan also experiences joy through his accomplishments and from his loved ones.

As the documentary commences, viewers are introduced to Ethan and his mother, Tina Marie, who passionately supports Ethan and aids him in overcoming his individual obstacles. The first voice that viewers hear is Cox’s, who asks Ethan’s mother what she thinks when other children see Ethan.

"I think when they first see him, they see a boy who can’t," Marie said.

Cox then asks her what she hopes that others see when they see Ethan, and Marie responds with “that he can.”

Throughout the documentary, Cox captures the essence of Ethan’s life and allows viewers to connect with him emotionally She accompanied Ethan throughout the summer and captured Ethan in his five therapies, life at home and his adventures at summer camps.

Through her documentary, Cox wishes to create advocacy of inclusion for disabled children and a meaningful image of how therapy impacts the life of an individual with a disability.

Creating the documentary was not all that easy for the student. At Ethan’s summer camps and therapies, certain policies restrict other individuals from filming any of the children's faces during therapy. Cox was able to get consent to film only Ethan and his therapists.

"This was hard because one of the things that Ethan loves doing is observing people,” she added.

“A Different Documentary” can be viewed on YouTube.

Photo 1: Ethan’s mother, Tina Marie, Ethan, and Callie Cox

Photo 2: Ethan and his speech therapist, Cheryl Kent.

Images via Briana Outlaw