KJ’s Story

Meet KJ.

  • 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
  • Condition: Stevens-Johnson Syndrome

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.

Add KJ Funeral Photos & I Love You Signing Video

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

KJ’s Photos

KJ’s Blog

Popeye91

Well almost a month ago I was put on a vent for four days which is the longest time I've ever had to have it at once. I spent some time in icu once it was taken out then the recovery process began but I'm not gonna lie this time really scared me cause of how fast everything happened plus I just wasn't recovering as fast or at least on pace like I have all the other times. I'm no stranger to being put on a vent or recovering from it but this time has been different. I am very blessed and thankful for all the prayers and we'll wishes I know it helped but it has been rough there was fear there that has never been there before which caused doubt to set in and the questions in my mind.. am I making progress? My voice is gone will it ever come back? And has to much damage been done this time will I ever be the same? When you can't talk and are so tired you can't even see you're trapped in your own mind and that anxiety seems to never go away but as I said I am blessed with such wonderful family my parents never left my side my brothers and sisters helped so much as well and then all the prayers and love sent from everyone I do thank everyone and thank God for getting me through that first stage it was definitely a toll on my confidence and mentality but they moved me over to health south rehab to do therapy. I just have to say they are so great here my case manager rusty has really done great getting everything I need and answering any and every question I had..now to my OT Tony he was great with helping me get my strength back in my upper body but he was pretty Kool to hang out with..but I have to say my PT Jayla was definitely awesome!! As I said before this time got in my head and I hadn't felt like I was making any progress and doubt clouded my mind but she would talk with me settle my nerves but she kept building my confidence back she helped me get out of my own head and showed me I was making good progress.. "side note I wonder if it's a job requirement that all PT ladies are are pretty or if I'm just lucky like that?l :)"I get to go home today but I still have a lot of work to do and will continue home therapy but progress has been made thanks to the wonderful staff here at health south.. I feel so blessed thanks to the good Lord for giving me the strength to keep going through this tough process..

Reply

Hannah Fulkerson

KJ-It was so nice to meet you at the Superhero Gala last night! I really look up to you and all that you've overcome. That take a lot of strength, bravery and courage. You're superhero status for sure : )

Reply

Popeye91

Well today is day one of our Oklahoma firefighters burn camp I've been packed and ready for a few days now can't wait to see everyone these next 5 days will be a blast and get to see some really inspirational kids. I've been goin to camp since I was a kid this will be my 17th year at camp and to get to be apart of something as awesome as this is truly a blessing!! More updates to come throughout the week!! ☺

Reply

Popeye91

Well the month of May is always a hard time for me and my family especially the first two weeks with my mom's birthday on the first then the anniversary of the fire and her and my brothers passing on the 11th plus mothers day and with all that brings back painful memories but it brings back the good memories as well and yes they are painful as well but it's a joyful pain that I'm lucky to feel which also got me thinking how grateful and blessed I am cause with all that pain I was rewarded. I have my wonderful mom lora who has taken and still takes such good care of me and tho I miss my mom everyday so much I couldn't picture my life without lora.i am so blessed I got to have two really wonderful awesome smart beautiful and strong women I got to call mom so this goes out to both my great mom's who I love very much!! 🙂

Reply

Jennifer

A great read!!! So proud of you Kj!!! Love you buddy!!!

Popeye91

Thank you very much! 🙂

Reply

Leave a New Comment