Meet JJ, Andrew and their Family

Una Casa y Una Causa (A House and A Cause)

The front door to the Cabrera’s house is rarely left closed – aunts, uncles and cousins often drop by unannounced. The creaking hinges are a testament to the bustling and inviting nature of the home, which was built from the ground up by Miguel, who walks through the door. He smiles warmly and says hello to his grandson Jose de Jesús, or JJ, who puts down his video game controller and embraces his grandpa from his wheelchair with a glowing smile.

On the couch, his little brother, Andrew, giggles with his two cousins – who are all engrossed in the onscreen competition and are eager to get back to the game. Like most brothers, JJ and Andrew can at times be competitive and poke fun at one another, but they care for each other deeply.

JJ and Andrew live with Duchenne muscular dystrophy (Duchenne), a rare neuromuscular disease that progressively weakens the muscles. This diagnosis pushes them both physically and emotionally, but it has also strengthened their bond with each other and the rest of their family.

“My family – we’re big and loud and we’re all really close,” says Monica, JJ and Andrew’s mother. “We’re all in this together.” Monica brings in art supplies to JJ and Andrew, who are both avid sketchers and comic art fans. Meanwhile, Maria Guadalupe, her mother, works tirelessly in the kitchen, preparing dinner for any number of guests. Grandpa Miguel, the ‘tinkerer,’ is often busy finding ways to make the single-story house more accessible for JJ’s wheelchair. “He treats them like his sons,” says Monica. “The diagnosis really affects him too.”

As a single mother, Monica continues to provide for her boys as she too navigates the complicated landscape of Duchenne. When medical devices and services aren’t covered by insurance and money is tight, she puts the word out to family and they organize community-supported fundraisers in the western suburbs of Phoenix.

“We’ve done food-sales, raffles – different types of events to get the community involved.” The family’s menudo and tacos have become famous around their neighborhood. While providing a source of funds to support JJ and Andrew’s care, the fundraisers have also enabled the Cabreras to raise money for other families affected by Duchenne, especially in Mexico.

Ultimately, Monica views herself as fortunate, although her road has not been easy. “I went from being a single parent working toward a better life situation – to all of a sudden, having to become a scientist, a doctor and a physical therapist.”