According to the Santa Cruz Sentinel, Josalyn Catarino is an 11-year-old who loves Disneyland, TV romance shows, the ocean, and getting her fingernails painted. This, of course, sounds like any other 11-year-old girl. Different from most other girls her age, however, is that Josalyn also suffers from a rare disease called spinal muscular atrophy.

Spinal Muscular Atrophy Explained

Spinal muscular atrophy is a rare disorder that affects approximately every 1 in 10,000 people. Spinal muscular atrophy, in the general sense, causes mild to severe muscle weakness. There are different types of the illness, and the types are determined by age of onset and condition severity. Most cases of spinal muscular atrophy arise from a mutation in the SMN1 gene. This mutation triggers a loss of motor neurons in the spinal cord and brainstem. The loss of motor neurons in these crucial body parts result in weak and atrophied muscles that ultimately affect the body’s movement as a whole. Treatment options available include tracheostomy, noninvasive respiratory support, gastrostomy, physical therapy, bracing, and surgery. To read more about the specific types of spinal muscular atrophy, click here.

Josalyn’s Condition

In Josalyn’s case, her disease is ultimately fatal. Even now, her only method of communication is through eye movement. Not only this, but she has also no longer capable of blinking. Her breathing is assisted by a mechanical ventilator, and she can only eat by way of feeding tube. Her condition, unfortunately, is continuously deteriorating. The rare disorder will affect every 1 out of 6,000 children. Most of the children affected won’t live to turn two, because there is no cure or treatment for this type of spinal muscular atrophy.

Doing it Differently

For most kids with rare and fatal diseases like Josalyn, the children are subject to intensive care facilities or hospitals. Josalyn did this from ages 1 to 5 in a care facility, but now Josalyn lives with her family in their apartment. With the appropriate adjustments, the Catarino family is doing it a little bit different. For example, the main room in the apartment hosts a hospital bed as well as medical equipment.

“I’m basically running a subacute care facility in my home,” said Jesus Catarino, Josalyn’s father. Jesus stays home to care for Josalyn full-time after recently completing the first year of training to become a respiratory therapist.

A Little Extra Help

Though Mr. Catarino stays at home to care for Josalyn, the family also receives some extra help from Coastal Kids Home Care, which is a non-profit in their area that does exactly what the Catalino family needs; it provides in-home nursing as well as therapy services to families, like the Catarinos, with terminally-ill children.

Josalyn’s family thinks nothing less than the world of Coastal Kids, and claim that they would not be able to keep their family intact without their help. According to the Catalino family, Coastal Kids enabled them to take their daughter on trips around the country, and not just fun trips like Disneyland, but to conferences that allowed Josalyn to interact with other kids with the same disease.

The staff at Coastal Kids helped the Catarinos deal with the state’s medical bureaucracy, and the nurses at Coastal Kids taught Jesus and his wife Nancy how to care for Josalyn in their own home. This includes administering respiratory treatments six times a day, along with other necessary therapies.

Though the nurses have helped give the family a lot of freedom, they still frequently make in house visits and have begun helping the family prepare for the end as Josalyn’s condition worsens.

“I feel like I’ve been able to show her the world,” Mr. Catarino said.

But Coastal Kids doesn’t stop there. The organization offers a plethora of services to families, like family counseling as well as social workers who are able to assist in navigating the financial challenges and hurdles of long-term care. Coastal Kids also provide massage, pet-therapy, art and music 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 executive director of Coastal Kids Home Care, Margy Mayfield. “You can be with them every day, and have hope with them everyday but keep them very comfortable and watch them go at home.”

First of its Kind

Coastal Kids Home Care is actually the only one of its type working on and around the Central Coast. Because of this, the organization is filling a major void and improving the lives of many who would not have had the option before.

“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 the executive director of an organization that works closely with Coastal Kids, Jennifer Ramirez.

Coastal Kids began operating in 2005 and helps over 600 new families every year. Mayfield’s inspiration for founding the organization came from realizing that there was way more focus on geriatrics rather than pediatrics for in-home care.

“I kept thinking to myself, if we ran a really lean and mean organization that focused on children, can we make that happen?” Mayfield questioned. “And 13 years later, here we are.”

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