Levi's Story: Mysterious disorder burns boy from inside out

New Braunfels boy defies odds

An 11-year old boy from New Braunfels envisions a career one day in photography. In his head, he can see all kinds of colors, and yet his sight is limited to the faintest of glimmers out of the side of his right eye.

"I want my normal life back. I want my life back," Levi Gutierrez said. "I have a different life now. I want the old one back."

The blindness traces back to this exact day three years ago: February 10, 2012.

As Levi's mother recounted her son's brush with death, tears filled her eyes and her voice trembled with emotion.

"It was terrible. It was the hardest thing that we've ever been through in our life," Kelly Gutierrez said.

Levi teetered on the abyss because his parents tried to do the right thing. They signed off on a new prescription to treat the seizures in Levi's life. He had taken one form of medication or another since the age of two to help control seizures.

At first, his doctor thought Levi had developed a bad case of chicken pox, overlooking the new medication prescribed to Levi. But then his skin started to peel, and his organs started failing.

"The doctor said had we not gotten there that day, he would have died on us the next day," Kelly recalled.

It turned out Levi had contracted a rare, mysterious, life-threatening skin condition called Stevens-Johnson Syndrome (SJS). His body started to burn from the inside out. He lost 85 percent of his skin.

There are roughly 300 new diagnoses of SJS each year. Doctors don't know why people get SJS, but agree there is a genetic predisposition to it. It's a disorder of the immune system often triggered by over-the counter medication or prescription drugs.

"For a while, I sat and I blamed myself because of this happening to him," Kelly recalled, as Levi grabbed her arm and bent over to kiss it several times in fast repetition. "Had I not followed the doctor's orders, had I not given him the medication, he would not have contracted this."

Levi had to be rushed by an air ambulance to a hospital in Galveston. He spent six months there. He emerged -- at the age of 8 -- with an entirely different perspective of life.

"My son was able to see for eight years of his life. The hardest thing is to explain to an 8-year-old child why he can't see anymore," Kelly said.

SJS seared Levi's tear ducts and scratched off his corneas, because, as Kelly described it, the "insides of his eyelids were like sandpaper." Declared legally blind, he has no sight in his left eye and just the slightest ray of vision in his right.

To ride a bike, it requires the help of two adults. To play his cherished Nintendo DS, he holds the game system flush with his forehead and squeezes a sightline through the periphery on his right side.

"Levi, when you look at him, he looks like a normal child. When you get really close to him, that's when you see he's legally blind," Kelly said.

Levi has had 21 surgeries since the diagnosis of SJS -- 12 of them on his eyes alone. He lost so much, but he's come so far and truly appreciates the gift of life.

"If I was in heaven right now I swear, I would not be happy, because then I was away from my family forever," Levi said.

"He always ALWAYS asks me 'why did God do this to me,' and I told him God had a special purpose for you," Kelly said as she reflected on Levi's decision to share his story of SJS and survival. "This might be your purpose Levi to be able to talk to people and show people how strong you are and that you can pull through this."

Levi's family pursued legal action against the manufacturer of the prescription medication which triggered his SJS. The family lost its lawsuit, but cherishes the victory of Levi every day.

For now, Levi is home-schooled, but the plan is to get him back to class. He believes his seizures nor his blindness will get in the way of his goal: to be a photographer one day.

"They take pictures of a lot of cool stuff and that's what I want to start doing."

To find out how you can support those suffering from Stevens Johnson Syndrome, go to SJSSupport.org.


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