“There is a huge shortage of specialized therapists.”

Kathryn Chimienti

Meet Kathryn

Kathryn lives with hydrocephalus, cerebral palsy, periventricular leukomalasia, agenisis of the corpus callosum, and cortical visual impairment.

Fresno, CA CA Map
Kathryn Chimienti
Dorilyn Chimienti takes her daughter, Kathryn, to a class for children with special needs in Fresno, CA. The drive takes 35 minutes each way. In addition to school, Kathryn has regular appointments with a neurologist, neurosurgeon, physiatrist, otolaryngologist, and ophthalmologist. (Photo: Deanne Fitzmaurice)
Kathryn Chimienti
Once a software trainer, Dorilyn has become a full-time, stay-at-home mom in order to help Kathryn eat, dress, bathe, use the bathroom, and get to her many appointments. (Photo: Deanne Fitzmaurice)
Kathryn Chimienti
At school, Kathryn gets vision, speech, and occupational therapy. (Photo: Deanne Fitzmaurice)
Kathryn Chimienti
Kathryn dances with her teacher, Alysia Newmark. (Photo: Deanne Fitzmaurice)
Kathryn Chimienti
Dorilyn gave birth to triplets at 23 weeks (most pregnancies last 40 weeks). Kathryn was the only child who survived, but her brain had not fully developed. (Photo: Deanne Fitzmaurice)
Kathryn Chimienti
Kathryn has a sensory challenge that causes her to lick things. After Dorilyn moved this chair, Kathryn started banging her head on the wall. “She has given herself goose eggs banging her head,” says Dorilyn. (Photo: Deanne Fitzmaurice)
Kathryn Chimienti
Kathryn sees an ocular specialist 2500 miles away in Pittsburgh, PA. It took Dorilyn six months to get Kathryn’s last appointment with the specialist. (Photo: Deanne Fitzmaurice)

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Kathryn Chimienti Kathryn's care map
Kathryn'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.