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Stephen’s Story

Site created on February 21, 2017

We (Ron and Cindy Johnson) adopted Stephen (Stevie) Johnson at birth. From the beginning, Stevie fought the world he had come into. He cried incessantly during the day, didn't like being touched and his caregivers were in for a wrestling match when it was diaper change time. Despite his dislike of the world of noise, light and touch, he was an angelic looking child that we were determined to love. We sought early intervention services for Stevie but at the time (mid 1990's) not much was known about Aspergers kids on the high functioning autism scale, so ultimately we patched together occupational therapy, a developmental pediatrician, reading therapy and home schooling to help Stevie learn. Despite not learning to read until 14, Stevie's comprehension was off the charts so Mom and Dad read to him everything he needed to know. His hard work resulted in a high school degree in 2012. In parallel to working with Stevie through his autism, at 11 we discovered that he had a rare metabolic disorder - acute intermittent porphyria. The disorder initially manifested as skin eruptions but by the time he was 18 he was suffering from acute attacks which included seizures, muscle weakness, psychotic episodes and more. This disease, with an incidence of 1 in 500,000 is difficult to get the appropriate treatment for and we have worked hard to stabilize Stevie's condition. Imagine, if you will, suffering from a social and sensory disorder and also a metabolic disorder that demands constant monitoring, lifestyle excellence and frequent hospitalizations. Every acute attack was a challenge, but we were slowly working toward stabilization with the help of Dr. Flavill (neurologist), Dr. Trillo (hematologist) and Baylor Scott and White McKinney. Stevie had married (Shannon Fitch) and has a daughter (Harlee Johnson) both of which he loves to the end of the world. On Friday, February 17, all of his progress was stopped by a terrible auto accident in Sherman/Denison, TX. He was traveling in a car driven by his step-father-in law that went airborne and landed upside down in a creek. Stevie survived because he had his seat belt on. His father in law didn't. Stevie was care flighted from Sherman/Denison to the Medical Center Plano Level 1 Trauma Center where he was diagnosed with a skull fracture, broken shoulder and broken pelvis. He is currently in a medically induced coma. He had successful surgery on his shoulder and is scheduled for surgery on 2/22/17 for his pelvis. He celebrated his 23rd birthday today in a coma. Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Cindy Johnson — Dec 12, 2018

First off, I want to apologize to all of you who have followed Stevie's journey for going dark. Due to pending litigation we are limited to what we can post. BUT...litigation or no litigation...we want to share that Stevie came home today after 22 months in hospital nursing home and rehab!!!

Of course, any change is hard for Stevie because of his Aspergers but today has gone SO smoothly. Stevie has progressed so far in the fourteen months since he finally got rehabilitation services. We continue to wonder how much farther he would be if he had not been denied rehabilition when he was coming out of his coma.

Stevie sent the following poem to me this morning to sum up his feelings. I'm so proud that he can communicate his feelings so well:

This ink, it runs
This paper is stained
Tears run free as
I'm stuck in a daze
I put this pen to paper
To write the words
This voice can't deliver
My heart is heavy
With pain and despair
Can't breath
I'm fighting for air
My mind is spinning
At the speed of light
This pain i my life
Has clouded my mind
The thoughts are deafening
Of my life you took away
But after all my
Heartache
Someday I'll be O.K.

Of course, Stevie still can't speak (which he could do when he came out of his coma and lost) and his hands are still contracted (which he will have surgery for tomorrow at UTSW) but we'll continue to fight to move forward.

For now, we're all SO happy and ready to eat the spaghettie and meatballs that Dad is whipping up. Life is good!

Read More of the journal titled "Stevie Came Home!"

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