On the afternoon of June 9th, after Christopher Leon and his family celebrated one of the most gratifying moments of his life -graduating from Verdugo High School in Los Angeles-, the face of this 22-year-old displayed fatigue, but above all, happiness.
“No matter what happens to me from now on, I know I did what I had to for the people I love and that love me,” said the young Angelino to his parents.
“He had a smile that spread from ear to ear”, narrated Julio León, Christopher’s father, who spoke to La Opinion by phone one day after returning home from the hospital, almost a month after his son had been admitted after graduation, and despite being at home, the young man was not available to speak with this newspaper.
“The doctors said it would take about three or four weeks for the drug to take effect,” he said, a bit in dismay, but hopeful for a smooth and fast recovery, and wanting his child to continue with his academic career.
His son is a graphic designer whose deepest love is superhero comics, that of Marvel and DC, and who at the short age of four months was diagnosed with spinal muscular atrophy (SMA), a genetic disease that has left him almost completely immobile and with an extremely weak immune system.
Christopher’s immune system is so weak that, having come to graduation, despite doctors’ recommendations not to do so, caused him discomfort: days later he was admitted to a hospital where he was diagnosed with thyroiditis and two collapsed lungs, said his father. Since he was released from the hospital, the recent graduate has been under constant medical care at home.
Throughout the course of his life, the young man has lost mobility in most of his body, save two fingers and parts of his face.
However, with the use of a small robot, VGo, the faithful motivation from his parents and loved ones, and the never ceasing medical care, today Christopher is among those who have been able to defy the degenerative disease, considered to be the most fatal in infants.
Son of a Salvadoran father and a Guatemalan mother, this young Angelino is challenging medical logic, and now, after graduating from high school, he faces a new challenge: to enroll in a college career that allows him to fulfill his dream of drawing digital animation at a professional level.
A challenge that surely, said his father, he will face with the same determination and courage he has shown throughout his life.
“For me he is my light, my super hero and he is the one who gives me the strength to go on,” said Julio, proud of all that his son has overcome.
The ‘Virtual’ Christopher
Christopher, explained his father, should have never made it this far. “We were told [Julio and his wife] that he would not live past the age of 2.”
In fact, having graduated from high school at his age is an achievement all on its own because, without the help of a small robot that he controlled from his home – yes, with only the use of two fingers – he would have graduated at the age of 30.
He had been homeschooled his entire life, thanks to the Los Angeles Unified School District (LAUSD) and their Carlson Home Hospital School program. But it wasn’t until he started high school that the young man wanted to test how it felt to be in a classroom – to feel like another student among his peers.
After various conversations with the administration and coordinating with Kari Tapie, director of the Instructional Technology and Assistive Technology Program, they came to an agreement. Come 2014, Christopher attended classes virtually at Verdugo High School, with the help of VGo, the robot. They chose this campus due to the graphic animation courses it offered.
“We’re proud to have been able to assist Christopher with his academic training, it is the ultimate compliment,” said Tapie to La Opinion.
From home, Christopher controlled the robot using two fingers on a touch pad. Through the robot, the young man could communicate by audio or written word – he liked to write, said his father –, transmitted videos and vice versa, and was in constant communication with his peers and teachers. It was an experience that changed the way he saw the world.
“The classmates saw the robot move through the school hallways, the cafeteria, and said, ‘Look, there goes Christopher!’ And waved, and he did the same,” said Tapie.
In fact, Christopher was the first to use the technology in a LAUSD campus. Out of the other eight students who are currently attending classes with a VGo, he is the first to graduate, Tapie said.
VGo in College
“This technology is very advanced and the LAUSD is very proud that Christopher was able to get ahead with its use,” Tapie said. However, despite being pleased with the program that facilitated his attendance in high school, she also regrets that the technology is not permanent to allow him to continue his studies.
But it doesn’t end here – a childhood friend of Christopher assures him.
Joseph Franco grew up with the graduate from Verdugo High School. Franco’s family and the Leon clan lived in the same apartment complex in the South Central. Since Christopher was a baby, said Franco, he was by his side. And even though they don’t live in the same city anymore – Franco’s job has taken him to San Francisco –, the desire to see him overcome every challenge is still present.
“His wish is to be a graphic artist, to draw,” explained Franco.
After graduating from Verdugo, Christopher was accepted at Santa Monica College. However, this campus does not offer the graphic design major that he wants to study, his father explained. It is, however, offered at California Institute of the Arts, an institution with which Julio has already established communication with. He hopes they can come to an agreement to allow Christopher the chance to study there.
“Technology has helped me a lot, all my life and I am very grateful for that,” Christopher said in a video shared by LAUSD. “Without technology, I could not express myself through my art.”
However, in order to continue his academic career, he will also need the same robot that allowed him to be virtually present during his time at Verdugo. His family, Franco, and the LAUSD want to help.
Franco launched a fundraising campaign through GoFundMe, where they hope to raise $12,500. About $8,000 are required to purchase the equipment and the required computer system, and the additional cost of monthly maintenance for the period of four years – the timeframe it’ll him take to complete his degree. Part of the amount collected will also help cover academic expenses.
To help Christopher, visit: https://www.gofundme.com/2au862c