As Ambrose Redmoon, an American writer and manager, once said, “Courage is not the absence of fear, but rather the judgment that something else is more important than fear.”

John Bohon, father of Xavier High School senior Blake Bohon and junior Dylan Bohon, was diagnosed with Chiari Malformation and Syringomyelia disease. Chiari Malformation is a disorder which causes certain structures of the brain to fail to develop properly and Syringomyelia is a disorder that develops when cerebrospinal fluid enters the spinal cord and forms a syrinx, which is an abnormal widening of the spinal cord that forms a cavity. This disease and its effects have changed John’s life because it constantly affects his nervous system and brain in numerous ways. Despite the toil this disease has brought John and the family, the Bohon family has grown stronger together from John’s diagnosis. 

“It has impacted us by making us stronger. His illness has brought my family closer together and it has impacted my brother [Blake] and I by making us become more independent and responsible,” Dylan said. “Looking at my father and what he has been going through and seeing that he is still fighting makes me want to have his strength and control when I get older. He is my role model.”

John has faced different forms of adversity throughout his illness, however, he has not let it stop him. His bravery is inspiring to his family and he is a model of hope and strength. “I can honestly say that if God knew anyone that could handle these trials and tribulations of their father’s health, it would be the Bohon family. They take every situation and in it they find a positive, which is such a hard thing to do,” senior Valerie Zeck said. “I have always admired Blake and Dylan’s faith in their father and in God. Obviously these challenges have affected them in their own lives, but they never cease to amaze me with their positive attitudes and willingness to keep fighting when life gets tougher.”

This disease affects the brain stem, the cerebellum and the upper cervical region of the spine, which presents many difficulties for patients who are diagnosed with the disease.  Some activities for John present some difficulties as he has lost feeling in his hands and feet and cannot control his hands without looking at them and telling them what to do. However, John has not let this stop him, as he is a constant inspiration to his family. 

Previously, the Bohon family raised money to help with treatment costs by selling T-shirts to spread awareness. For more information about Chiari Malformation and Syringomyelia disease and ways to help with fundraising, donating and research, visit https://asap.org.