Every Student Succeeding: The Art of Possibility

ACSA’s Every Student Succeeding Awards program turns 20 this year. In recognition, we begin a 21-part video series, showcasing courageous students who inspire us with their remarkable success. Watch their stories every Monday, leading up to the ACSA Leadership Summit awards presentation Nov. 10 in San Diego.

You would never know by looking at the artwork. You would never know the artist, himself, spends most of his days confined to a bed. But perhaps that is the beauty of Christopher Leon.

“If you just look at his work in isolation, and you don’t know him at all, you would say, ‘Wow. This is a great artist,’” said Ed Trimis, former principal at Verdugo Hills High. “And then you hear the backstory about where he’s come from and what he’s done, it’s even more incredible.”

Region 16 ESS recipient Christopher Leon’s passion for drawing can be traced back to his childhood.

“I just felt like I wanted to do that,” Leon said. “It seemed really fun to me. I read comic books and then I’d say, ‘I want to do that when I grow up. I want to draw superheroes in stories.’”

But to understand Chris’ story we have to go back to the beginning. Born May 19, 1994, Chris entered the world as a healthy baby boy. But he struggled to gain mobility and after months of testing, doctors diagnosed him with spinal muscular atrophy.

“They told me you better enjoy your son,” said Julio Leon, Chris’ father. “They said he would only live six months to a year and a half. I couldn’t speak no more. I had to go home. It was probably the hardest day of my life.”

“When everything happened, I just started to cry,” said Brenda Palma, Chris’ mother. “I was very scared but the doctor said he’s very brave. We’re going to come out of this. And he’s going to come out of this.”

Spinal muscular atrophy is a genetic disease that affects voluntary muscle movement. The loss of motor neurons leads to weakness and wasting of the muscles. It is the No. 1 genetic cause of death for infants. Doctors told Chris’ parents he would not live to see his second birthday.

“There were times that we would hesitate and say, ‘Where is God?’ But we know that he is there,” Julio Leon said. “So we kept on fighting and fighting.”

By the age of 10, Chris’ muscles used for breathing and swallowing had weakened to the point he needed a tracheotomy, a surgical procedure that opens the windpipe.

“It seemed like there are doors that are closing,” Julio Leon said. “But even him or somebody else opens another one. He doesn’t give up.”

Now 22 years old, Chris has been home bound since first grade and requires around-the-clock care.

“The love of a mother is very strong, and I don’t think anything is difficult,” Palma said. “There are days where he’s struggling and he’s very ill. I hardly sleep, but what satisfies me is seeing him smile.”

“It’s tough because people ask me at work, ‘How do I do it?’” Julio Leon said. “’How do I keep laughing knowing I have what I have with a special kid at home?’ But I just look at him and smile.”

One thing that keeps his parents smiling is Chris’ commitment to his artwork, using Microsoft Paint and Adobe Photoshop to complete his digital drawings.

“I use a touchpad with my finger to draw everything that I’ve done,” Chris said. “I guess it takes a little longer to draw some of the drawings because I’m a little slower. But it’s not so bad.”

Technology has not only impacted Chris’ artwork; it also changed his educational goals. Chris was one of the lucky students in Los Angeles Unified School District to participate in classes through VGo. A robotic device that allows students to attend classes from home, Christopher overcame his shy personality thanks to VGo.

“It was real science fiction,” Trimis said. “I was trying to understand it and comprehend it at first. But the idea was really intriguing to me. And I think the initial idea of a robot, a kid participating in school through a robot, I thought, ‘Yeah that’s awesome.’ I guess the constant challenge is he’s not the robot. Christopher is Christopher. And so I’m excited we’ve seen him more and more in person. The robot is cool but really the main thing about the robot is the access to get to Christopher and Christopher to get to us.”

Chris graduated from Verdugo Hills High June 9 and now plans to pursue a career in video game design, an impressive feat for a young man with spinal muscular atrophy who proved the doctors wrong.

“He really is a great example of what is possible,” Trimis said. “What is possible as an artist. What is possible as a person. And what is possible to overcome as challenges you face in life.”