Meet Evan, who lives at Beale Air Force Base, CA.
Evan lives with neurofibromatosis, including physical and speech delays.
“It hasn’t been easy for me to accept that he has been 2 years old for so long,” says Evan’s mother, Jazmin Gates. Evan is 4 years old, but Jazmin says he behaves like a 2-year-old and talks like an 18-month-old. (Photo: Deanne Fitzmaurice)
“Marissa is so amazing and patient with Evan,” Jazmin says, referring to her daughter. “They love each other so much.” (Photo: Deanne Fitzmaurice)
The Gates family lives on Beale Air Force Base, one hour northeast of Sacramento. Jazmin says it’s been hard to make friends with other families on base. Evan’s condition isn’t obvious, which makes Jazmin self-conscious when he screams or runs off in public. “I think people judge me,” she says. (Photo: Deanne Fitzmaurice)
Evan’s dad, James, works at Beale Air Force Base. Evan’s condition and access to specialists limits the number of bases where the Gates can live. Each time they’ve moved to a new base, they’ve had to find a new set of specialists for Evan, including speech, physical therapy, neurology, dermatology, and ophthalmology. Still, Jazmin says that Evan’s care under the military’s Tricare plan has been wonderful. “We never see a bill,” she says. “I cannot imagine being in the civilian world and having to pay for specialists. I don’t know how people do it.” (Photo: Deanne Fitzmaurice)
Evan’s current “NF” condition is considered mild. A more advanced version of NF would involve tumors in his brain, on his spine, or elsewhere on his body. James and Jazmin monitor Evan carefully to see if symptoms appear. (Photo: Deanne Fitzmaurice)
The Gates family cheers on Evan, who has just learned to draw happy faces. (Photo: Deanne Fitzmaurice)
“Evan becomes easily frustrated because he can’t communicate,” says Jazmin. “Most of the time I just guess what he’s saying.” (Photo: Deanne Fitzmaurice)
When Evan’s older sister was 3 months old, James Gates deployed to South Korea for one year. He could deploy again any time. (Photo: Deanne Fitzmaurice)
See Evan’s care map
Evan’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.