“It’s a ticking time bomb. We have to live our daily lives knowing that things could go haywire at any time.”

Daniel Iniguez

Meet Daniel

Daniel lives with neurofibromatosis.

Ontario, CA CA Map
Daniel Iniguez
At 5:30 a.m., Manuel Iniguez wakes up Daniel, the youngest of his four children. "How do your legs feel?" Manuel asks. "They didn't want to wake up," says Daniel. Recently, his calves have begun stiffening, making it difficult to walk up and down the stairs in their two-story house. He wears leg braces to help him stretch out his muscles. (Photo: Deanne Fitzmaurice)
Daniel Iniguez
Manuel gives Daniel his medicine in their home in Ontario, CA. Daniel's neurofibromatosis has caused tumors to develop in his brain, stomach, and spine. They may become malignant at any time, so Manuel and his wife, Dana, check Daniel’s body every night for tell-tale spots or bumps on his skin. "It's a ticking time bomb," says Manuel. "We have to live our daily lives knowing that things could go haywire at any time." (Photo: Deanne Fitzmaurice)
Daniel Iniguez
Daniel uses a nebulizer every morning to inhale medicine. (Photo: Deanne Fitzmaurice)
Daniel Iniguez
At 6:30 a.m., Daniel's bus arrives to take him to school. (Photo: Deanne Fitzmaurice)
Daniel Iniguez
Daniel's mother, Dana, learned so much about Daniel's genetic disorder, and the care required to manage it, that she founded the Neurofibromatosis Family Foundation to help other families find answers, too. (Photo: Deanne Fitzmaurice)
Daniel Iniguez
Daniel attends a class for special needs children in Montclair, CA. Today's lesson is about penguins. "Did anyone think more about penguins during lunch?" his teacher asks. "No, we were too busy thinking about lunch!" Daniel jokes. (Photo: Deanne Fitzmaurice)
Daniel Iniguez
Dana arrives at school to pick up Daniel for an appointment. All of Daniel's appointments are 30 to 60 minutes from his school and their home. And every three months, he and one of his parents travel to Maryland to participate in a study at the National Institutes of Health. (Photo: Deanne Fitzmaurice)
Daniel Iniguez
While waiting for an appointment in San Bernardino, CA, Dana works on Daniel's paperwork while Manuel helps Daniel with his homework. Dana and Manuel both work from home so that they can manage Daniel's care. In order for both parents to attend today's appointment, Dana's mother has agreed to pick up the other three Iniguez kids from school. (Photo: Deanne Fitzmaurice)
Daniel Iniguez
Daniel high-fives a nurse at a Loma Linda oncology clinic in San Bernardino. The nurse had cleaned Daniel's port, which was put in his body in case he needs chemotherapy treatment. A port is a small appliance installed beneath the skin that allows medications to be injected, or blood to be drawn, with greater ease. (Photo: Deanne Fitzmaurice)

See more stories here.

To share your story, tell us here.

Daniel Iniguez Daniel's care map
Daniel's “care map,” which illustrates the complicated web of medical care and coverage, as well as educational and support services needed for children with medical complexity and their families.