CAPITOLA >> In some ways, Josalyn Catarino is a typical 11-year-old girl. She likes getting her nails done, spending afternoons by the ocean, going on trips to Disneyland and watching sappy teenage romances on TV. But Josalyn also suffers from spinal muscular atrophy, a rare — and ultimately fatal — genetic disease that is slowly degrading her muscles and ability to move her body. These days, she can communicate only through eye movements. Recently, she lost her ability to blink. She breathes with the assistance of a mechanical ventilator, eats through a feeding tube and requires full-time care. And her condition is continuing to deteriorate.
But unlike many children with severe and life-threatening illnesses, Josalyn doesn’t live in a hospital or intensive care facility. After living from age 1 to 5 at a care facility in Campbell, she now lives with her parents, Jesus Catarino and Nancy Zepeda, and 5-year-old brother, Jesse, in the family’s Capitola apartment. The front room of the apartment is retrofitted with a hospital bed and medical equipment.
“I’m basically running a subacute care facility in my home,” Jesus Catarino said during a home visit with the Sentinel on Tuesday. Dressed in scrubs and with a stethoscope draped around his neck, Catarino looks ready to step into a hospital room himself. And, indeed, he is. Motivated by his daughter’s condition, Catarino just finished his first year of two years of training as a respiratory therapist.
Despite staying home with his daughter full-time while his wife works, Catarino said the family couldn’t manage alone. They rely on assistance from Coastal Kids Home Care, a Salinas-based nonprofit that provides in-home nursing and therapy services to families with acutely and terminally-ill children.
The Catarino family credits Coastal Kids with allowing them to keep their family under one roof and have the freedom to take Josalyn on trips to not just to enjoy Disneyland but also to attend conferences and meet other children coping with spinal muscular atrophy. Its staff helped the family navigate the state’s medical bureaucracy, and its nurses taught the parents how to care for their daughter at home, giving her respiratory treatments six times daily and among other essential therapies. The nurses still make frequent home visits, and as Josalyn’s condition deteriorates Catarino said the organization has begun working with them to prepare for the end.
“I feel like I’ve been able to show her the world,” Jesus Catarino said.
Coastal Kids Home Care has an array of support services, including family counseling and social workers to help navigate the practical and financial challenges of long-term care. They also offer art, music, massage and pet-therapy programs.
“To me it is the most beautiful continuum of a program where you can meet a family’s needs and understand their stress and not wanting to give up,” said Margy Mayfield, the nonprofit’s executive director. “You can be with them every day, and have hope with them everyday but keep them very comfortable and watch them go at home.”
The nonprofit is the only organization of its kind operating on the Central Coast, according to Mayfield and other area children’s health advocates.
“They essentially saw this great need that nobody was filling, and that was where Coastal Kids was born — to meet this need and serve these kids in the tri-county area where nobody else was, and, frankly, nobody else still is,” said Jennifer Ramirez, executive director of the Partnership for Children, which works closely with the nonprofit and provides transportation and other services to ill children in Santa Cruz, Monterey and San Benito counties.
Founded in 2005, Coastal Kids Home Care works with more than 600 new families each year. Children with life-threatening conditions make up more than half of their clientele, according to Mayfield.
Mayfield said the impetus for the nonprofit came out of her own work experience in area health agencies where she said she realized the system was often geared toward geriatrics than pediatrics. Many of the systems in place to care for elderly patients in-home, such as hospice care, didn’t apply to children whose prognosis was much less certain. Patients on hospice care can’t travel and are generally required to have a six-month end-of-life prognosis.
“I kept thinking to myself, if we ran a really lean and mean organization that focused on children, can we make that happen?” Mayfield said. “And 13 years later, here we are.”
story by Nicholas Ibarra