Meet Savitri from Dunlap, CA.
Savitri lives with cerebral palsy, developmental delays, seizures, and spastic quadriplegia.
At 6:15 a.m., Beverly Baker starts getting her daughter, 14-year-old Savitri, ready for school. She must cleanse her, brush her teeth, give her medication, dress her, and fasten her hijab with a pin. (Photo: Deanne Fitzmaurice)
“I usually fight my mom,” Savitri says, smiling. “She is a typical teenager!” says Beverly with a laugh. (Photo: Deanne Fitzmaurice)
Savitri was born at 26 gestational weeks (most pregnancies last 40 weeks). She weighed 1.5 lbs and could fit in Beverly’s hand. 100 lbs and 14 years later, she is too heavy for Beverly to lift. The lift system installed in her bedroom helps move her between her bed and her wheelchair. (Photo: Deanne Fitzmaurice)
Savitri’s elevator, installed in their Oakland, CA apartment building (before they moved to Dunlap), has once again jammed. Beverly keeps a broom on her front porch–it’s the tool she uses to fix the elevator every morning. (Photo: Deanne Fitzmaurice)
Savitri’s teacher, Santiago Bustamante, interacts with Savitri during an integrated PE class. (Photo: Deanne Fitzmaurice)
Beverly visits Savitri at school, which is 30 minutes away from home, but features the special education class that Savitri loves. (Photo: Deanne Fitzmaurice)
Savitri and Beverly attend music class at school, where Savitri learned to play the xylophone. (Photo: Deanne Fitzmaurice)
In 2016, the Baker family moved from Oakland (population 400,000) to Dunlap, CA (population 131), in the Fresno foothills. “For me, the main thing was gunfire,” Beverly says about Oakland. “Savitri’s nervous system goes haywire when she hears loud sounds.” The nearest school with a special needs program is too far away, so Beverly plans to home-school Savitri. “For the air and the views and the stars, it’s a small price to pay,” she says about their new home. (Photo: Deanne Fitzmaurice)
Savitri’s stepdad, Karim, hurries to finish chopping wood before the sun sets. (Photo: Deanne Fitzmaurice)
“Shoot it!” Savitri yells while watching a Warriors basketball game. Having spent much of their lives in Oakland, the Bakers are big Warriors fans. (Photo: Deanne Fitzmaurice)
Savitri’s care map
Savitri’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.