This Journey with Duchenne: Part 2

by Lorena Peinado and Jeff Reinhardt

about the author:

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

This Journey with Duchenne
—part 2—
(click here for part 1)

In 2016, Lorena found a new pediatrician who noticed for the first time that Gibran’s calves were very wide and it was then that the doctor asked for some tests. That July, they learned about the results: Gibran’s creatine kinase (CK) levels were high. This was a clear indication that he could have some type of muscular dystrophy. Genetic tests were ordered and a few weeks later the doctors had a clear diagnosis.

At that time, Alexa was staying with her father in Colorado. “My mother called and talked to my grandmother,” she recalls. “Then, my grandmother told me that my brother was not well and that something was wrong with him. He could stop walking or die. I really wanted to talk to my mother. I started to cry. My grandmother did everything possible to comfort me.”

Lorena could barely stand the news. Initially she fought to accept the reality of the DMD diagnosis. “During the first week, I didn’t want to know anything. I only had the word in my mind all the time – Duchenne, Duchenne,” but I wasn’t ready to know what it meant. But then I asked and prayed. I asked God to give me the strength to get up and look for information about my son’s condition.”

However, there were many obstacles to achieving this. Mainly the language, since the vast majority of the information about DMD was only available in English. She joined the DMD Moms Facebook group and approached Cure Duchenne and Parent Project Muscular Dystrophy (PPMD). “We need more information in other languages, not just in English,” she pleaded.

“I often had to intervene and translate in the hospital,” her daughter Alexa recalls. “It was crazy to have me, a young woman, translating all these complicated terms.” Being bilingual has been a great help. Even hired translators often struggled to explain the complex world and vocabulary of DMD.

“I learned that Duchenne has no cure,” Lorena recalls. “I learned that they have some medications that can help such as corticosteroids, although they have many side effects, but they can improve my child’s quality of life.” After understanding the information, she decided that Gibran would begin using corticosteroids, although it wasn’t easy to commit to using them.
Lorena wants to ensure that Gibran receives the best possible care, but “it’s not easy when we don’t have Duchenne clinics here in Arizona.”

Likewise, Lorena has had to fight for Gibran to get the educational resources he needs to finish school. Gibran has been diagnosed with obsessive-compulsive disorder (OCD), challenging behavioral disorder and attention deficit hyperactivity disorder (ADHD) that prevent him from learning in a traditional environment. “It is not easy to obtain an IEP (individualized education plan),” laments Lorena. “I had to move him to another school district, but now he has teachers who help him.” Obtaining the right educational support has been so difficult and challenging for Gibran. “He goes through a lot of things,” Lorena reflects. “I admire him. He always stays positive.”

In truth, Lorena needs Gibran as much as he needs her. His peculiarity and sense of humor give her a respite from the heavy feelings of loss and loneliness that often invade Lorena’s thoughts. “I’m a single mother,” she says. “I have to question myself. I have to cry alone and I have to move on.”

—part 3 coming soon—

Leave a Reply