Champions of the Foundation

Meet KJ

Condition: Stevens-Johnson Syndrome

  • Loved Music, Sports, Video Games & time with friends
  • Believed that something as simple as a smile can make someone’s day
  • Believed life was a gift and shouldn’t be wasted being stuck in the past

Learning to convincingly mimic Queen’s Bohemian Rapsody with words and a wild air guitar is just one of the ways KJ learned to infuse fun into his day and escape the enormous challenges that beset him early in life.

Faulty wiring in a mobile home that housed his family resulted in a choking blaze that claimed the life of his mother and little brother. At 8-years old, KJ remembers waking startled on his top bunk, and before he could escape, passing out from the smoke.

The next thing he remembers was the bumpy ambulance ride with his dad, who pulled KJ out of the fire, crying over him. After doctors stabilized him, he was airlifted to a burn center suffering from more pain than he could imagine. After three weeks he was released only to encounter something that proved even worse.

As a nightmarish reaction to an antibiotic was given, KJ developed the highly rare Stevens-Johnson Syndrome TENS (SJS), an extremely rare condition where the body literally burns from the inside out. Fortunately, two doctors who saw him had treated SJS before and recognized the symptoms. At St. Francis Hospital in Tulsa, they put KJ into an induced coma.

In KJ’s words: “They said it was up to God and me if I were to make it through the next 14-days.” KJ did, and after a month in the coma, they began to bring him out. Yet after that came a series of operations, and excruciating skin grafts and physical therapy. Then, even more serious, both KJ’s lungs collapsed and only one partially recovered. If that wasn’t enough, the SJS made him mostly blind. Because he and Hannah (another of our Inspirational Faces) shared the debilitating effects of SJS, they became good friends with a lot in common.

To aid in his recovery, KJ and his family had to be relocated. Living close to a toxic site in Oklahoma was highly detrimental to his health, his breathing, and his progress, so the Courageous Faces Foundation moved his family to a home in Arkansas close to the hospital for ongoing medical care.

The move gave KJ another year of life in a clean location with his family, before mounting complications finally became too much for him to survive. KJ passed away in the Fall of 2018. Courageous Faces Foundation was privileged to organize KJ’s memorial service attended by nearly 400 hundred people.

Cool things to know about me that I loved:

  • Music
  • Sports
  • Video Games
  • Movies
  • Superheroes (especially BATMAN)
  • Going out with friends and family

Things I want you to know about SJS/TENS:

  • They are the same thing, but TENS covers more surface of the body
  • They are caused by an allergic reaction to meds, so try and be aware of what you’re allergic to and what kind of reactions the medicine given can cause
  • They both effect all the internal mucous membranes
  • They both can cause the body to stop producing tears resulting in many eye issues
  • They both cause respiratory complications from the over production of mucus in the sinuses and lungs

Things people should know about fire safety:

  • Always have smoke alarms throughout your house
  • Have an escape plan and routinely go over it with your family
  • Teach fire safety to your kids including not to play with matches or lighters

Things I have learned on my journey:

  • Stuff happens and sometimes life is hard
  • You can’t just dwell on the past or the negative
  • Life is a special gift so try and share that with others
  • Something as simple as a friendly smile could change someone’s whole day for the better
  • No matter what others may say or think about you, what matters is how you feel about yourself. At the end of the day, the only thing that matters is if you can live with the way you are
  • Know that God has a plan for you and even in the darkness. He will shine a light

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