This Journey with Duchenne: Part 1

by Lorena Peinado and Jeff Reinhardt

about the author:

Lorena Peinado is 43 years old, originally from Chihuahua, Mexico. In 2011, she moved to the United States. She currently lives in Arizona and is a single mother of two beautiful children: Alexa, 16, and Gibran, 12.

This Journey with Duchenne

Gibran loves to spend time in his office. Although that may sound unusual for a 12-year-old boy, he really enjoys spending hours at his desk – an improvised cubicle in a corner of his family’s living room. From this modest point of view, sitting in a large pilot’s chair, he plays, interacts, learns and fulfills his desire to explore the expanses of the world, even if it’s only through his computer.

His appetite for information is voracious. “I like to learn about other cultures, other places in the world and about cars,” says Gibran. He browses YouTube in search of the most informative videos from distant countries and learns everything he can about their history and culture. “I learned about Italy and Paris. I could see the Eiffel Tower!” Many of his desires to travel are closely linked to his love for the various dishes of food. “You can also learn how to cook from online videos. I can cook fish, chicken and other meats,” he says proudly. Lorena, his mother, encourages him to continue cooking, buying utensils and special ingredients. “He loves to plan what we’re going to have for dinner,” she says. “I like to let him cook. He garnishes the dishes and he does a very beautiful job.” His passion even helps to relieve part of her workload, which – as a single mother of two children – is no small thing.

Gibran’s dream is to be a chef.

These curiosities, skills and aspirations fill his family’s home with inspiration, while they collectively struggle with the fact that Gibran’s life hangs on a thread. He was born with Duchenne muscular dystrophy (DMD), a complex neuromuscular disorder that has already begun to take away his physical abilities. The genetic disease linked to the X chromosome begins to deplete muscle mass from an early age, hindering mobility before causing more serious damage to vital organs such as the lungs and the heart. After being diagnosed at the age of six, Gibran and his family have been consumed in an effort to compensate for the worsening of the condition. And in the meantime, they continue to pray for a treatment that saves his life.

For Alexa, Gibran’s older sister, this fosters a unique relationship. “He told me that if he becomes president, the first thing he will do is kick me out of the country,” she says jokingly. When asked why, Gibran responds, “She’s bad.” In many ways, the two are typical siblings. “But with us, it’s more complex,” Alexa explains. “I know that our time is limited. I feel that we should spend more quality time together.”

Under his teenage appearance, bubbly smile and face, Gibran hides a deep well of experience and maturity, something exceptional for someone of his age. Alexa helps Gibran to get dressed, to get up from where he is sitting, to put on a BiPAP mask and many other things. As his DMD progresses, Gibran needs more support. Alexa and her brother go to bed and the two take a very necessary nap together.

Outside the family’s mobile home in Glendale, Arizona, the heat of summer hits the neighborhood, cooking the pavement in the three digits. The whole family is used to the heat of the desert. Before living in Arizona, Lorena lived much of her life in Chihuahua, Mexico, where her parents still live today. After finishing college, Lorena had Alexa in the United States.

Gibran was born four and a half years after Alexa, in Denver, Colorado. In his early years, he constantly lagged behind his peers in the milestones of physical development. “He didn’t crawl, he didn’t speak and started walking very late,” Lorena recalls. “Compared to other children, he couldn’t do the same things. He couldn’t go up the stairs or run. He also fell a lot. When Gibran was two years old, he suffered a very hard fall and had to go to the hospital due to a head injury. His skull had fractured.”

Fortunately, the injury did not cause lasting damage, but a neurologist vehemently warned that he should not be allowed to fall again. While the fracture was healing, Gibran kept falling. He also had strange behaviors that began to worry Lorena. She thought he could be on the autism spectrum, which is why she took him to another neurologist for evaluation. The specialist concluded that Gibran did not have autism, but Lorena’s anxieties did not disappear. “I knew something was wrong, but I didn’t want to believe it…”

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