This Journey with Duchenne: Part 3

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
—part 3—
click here for part 2

Lorena works in a school cafeteria, which allows her to align her schedule with that of her children and gives Gibran an adequate amount of time for home care. It is something she would like to be paid for, but it is not an option of the Department of Economic Security that manages state services in Arizona.

Two years ago, the house they rented was sold, putting Lorena and her family in a precarious housing situation. “They told me that I had a month to move,” she recalls. “I was very scared.” Fortunately, her sister, one of her strongest sources of support, intervened to sign a new lease in the mobile home in which the family currently resides.

However, more expensive sums await on the horizon as Gibran makes a more complete transition to the use of mobility devices. He currently uses a manual wheelchair and a mobility scooter. Although Gibran can still walk inside the house, most of the time he prefers to use his scooter to sail the outside world. With the scooter facing the street, Gibran can easily navigate the neighborhood. And although it takes two people to lift it, it is small enough to fit in the trunk of Lorena’s car.

While the electric scooter works well for now, as the muscles of Gibran’s upper body weaken further, an electric wheelchair will be needed. A device par excellence for children with DMD, as they get older. However, the seat will require a larger and more accessible vehicle and Lorena doesn’t have the resources to buy it. Numerous house remodeling works are also required to have a larger space where Gibran can move around in his electric wheelchair. “I try to take each of these things as they come,” says Lorena, as the overwhelming feelings approach that come when thinking about the future.

Alexa recently had her quinceañera party. She turned 15 last June. With an innocent look on his face, Gibran approached his sister and asked her for a dance, a dance that Gibran always wanted to do with his sister. Alexa took Gibran’s hands and the two danced, celebrating each other honestly. “Alexa was very happy at the time,” Lorena recalls with nostalgia. She is happy every time her children get along. “Sometimes, Alexa tells me: ‘I love my brother, but I can’t stand it.’”

“The challenges are too many, even more so as we battle them alone. I pray and pray that God provides me with the wisdom and strength I need in the midst of our journey with Duchenne,” says Lorena Peinado.

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