Patient Stories:Marcos & Jesús

Patient Stories:Marcos & Jesús

Marcos and Jesús fall asleep every night under a tapestry of stars. On their bedroom ceiling, the night sky splays out above them, complete with outlines of constellations carefully hand painted by their mother. The boys are enthusiastic amateur astronomers—dreaming of mingling with other planets—and they love to display the capabilities of their new telescope pointing out the window. From its powerful lens they can gaze into the distant wonders of space, although there is always the question of who gets to see it first.

“They can't stand each other and yet they hate to be apart,” relates their mother, Maria Angeles. Marcos, the elder, never bullies his younger brother, but the competitive urge is certainly there. They excitedly show off their toys which range from Toy Story figurines and miniature cars (Jesús’ favorite), to a detailed anatomical model of a human skeleton. Scientific endeavors seem to be at the forefront of their minds. Marcos has already set his aspirations on being a pediatrician.

“He wants to be a doctor,” explains Maria Angeles. “He says he wants to find a cure for Duchenne.”

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However, when it comes time to clean up, Jesús takes the lead, as he doesn't let being the younger diffuse his innate sense of responsibility. “Marcos is more easily distracted. It is hard for him to focus on one thing, while Jesús is more focused and organized.”

One thing the boys tackle together is managing the disease they were both born with, Duchenne muscular dystrophy. “It is a disease that makes my muscles shrink, although it goes little by little,” says Marcos. Even at a young age, both boys are starting to come to terms with the degenerative nature of Duchenne, despite not yet experiencing substantial symptoms. They also seemed poised to overcome it. With a beaming smile that barely fits on his face, Jesús repeatedly shows how he can stand up from the ground without using his hands. From the naked eye, it would be hard to tell that anything was amiss, although these are recent developments. Laughter and lightheartedness did not come without fortitude.

“I never thought we'd have these problems,” says José Maria, Maria Angeles’ husband and father of Marcos and Jesús. Little could prepare him for the news that his two boys were facing Duchenne. Marcos had been noticeably lethargic for a five-year-old and seemed to be falling down a lot. After some blood tests, doctors noticed that he was also quite anemic. His condition did not improve and he ended up spending three months in and out of the hospital. “One of the worst moments was when we were waiting to find out what Marcos had,” recalls José Maria. The doctors ran a urine test and found proteins that suggested some type of muscular dystrophy. “Then, it got worse. We found out that Jesús had it too.” At 5 years old and 6 months old, Marcos and Jesús were both diagnosed with Duchenne.

Hard times followed for their parents. “We were very depressed at the beginning,” remembers Maria Angeles. José Maria had worked as a copy-machine repairman, traveling across southern Spain, but following the diagnosis, he lost the will to work. “I didn’t work for six months,” says José Maria. “I was without life—not knowing what to do—locked in a room without doing anything. I just came out to eat and sleep.” Maria Angeles fought the tendency to lose hope and supported her husband through his struggle with depression. From this, the two began to strike a strange balance. “When one was depressed the other tried not to be,” says Maria Angeles. “It was hard, but we are positive people, so it has brought us together.” The couple pushed aside the dark clouds hanging over them, and found strength in each other.

Together, they started researching Duchenne and refused to accept its prognosis. Via their research, they learned about an association of Duchenne parents who were soon gathering for their annual meeting in Madrid. It was the first time since diagnosis that José Maria and Maria Angeles felt a sense of hope for their boys. “I knew what destiny had been written for my children, and I was aware that from that moment on, I would spend my life rewriting it,” says Maria Angeles.

The couple flew to Madrid to attend the meeting of the Duchenne Parent Project España and quickly learned that the community was being called together, partially, to disband. Sadly, the organization had lost momentum. “Either we took over or it would disappear,” says José Maria. “Nobody wanted to be president of the organization, so I decided to step up.” The couple immediately transitioned from being the newest members to leadership roles.

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“We believe that parents should never feel alone and abandoned like we felt when we received our diagnosis… We fight this disease every day,” says Maria Angeles.

With new responsibility came new inspiration. “Once I took the reins of the association, I regained my personal life.” José Maria harnessed a new energy and returned to work, seeing renewed purpose to his actions. “It was a clear objective,” he recalls. “To fight against Duchenne.” Meanwhile, Maria Angeles took on the role of Treasurer.

With their enthusiasm, José Maria and Maria Angeles began to grow a network and breathe new life into the project. “The organization was going to end in 2012, but four families from Seville tried to keep it going,” says Maria Angeles. Since then, involvement has flourished. “At first, we were four and now we are almost 200.” The ability to share roles of giving and receiving support from other Duchenne families has become a crucial part of her and José Maria’s lives. “Some families call us when they are very desperate,” she continues. “They don't know what do... They listen first, then they talk about their experience, and we talk about hope and all the things we can do to make things better.” The organization pools its resources to fundraise for research and provides direct support to families including explaining treatment options and counseling with psychologists. José Maria and Maria Angeles have also shifted roles in the organization: he now holds the position of Secretary and is in charge of the Attention to Members wing, while she works in the Family Care department.

José Maria also took it upon himself to help raise awareness by running a marathon in Seville. “I started training last August,” he says. “I weighed 100 kilos. I lost 20 kilos before I ran the marathon. This is the first time I did any run like this. Now, I continue to run to spread awareness.” He pushed Marcos and Jesús in a stroller for a few of the kilometers and in a show of community solidarity, family and friends joined José Maria, crossing the finish line with him. “We ended up with 12 people at the end.” Maria Angeles rode her bike alongside her husband for some of it. He successfully raised over €6000 for Duchenne Research. Now, Marcos and Jesús are more than eager to accompany him on his regular runs. “Now, they even argue because one wants to go with him and so the other says he wants to win, so he'll go with someone else,” says Maria Angeles.

Despite the physical limitations that come with Duchenne, little gets in the way of Marcos and Jesús’ desire to play. As Jesús attempts to descend the slide, Marcos comes running from the side and collides with his little brother. “Cuidado,” yells Maria Angeles (watch out!), but the boys are not looking for a confrontation. They giggle and hug each other on the slide in a playful embrace. The normalcy of these moments touches their parents in indescribable ways. “I hope they will be able to follow all their dreams and live them,” says Maria Angeles. “In this moment, we're waiting to see what comes.” They hope for a cure to Duchenne, but are prepared for any outcome. “If a cure doesn't arrive, we still hope they have a good life,” says José Maria. For now, this is a dream that seems well on its way to being fulfilled.