Wish Book: Caring for medically fragile South Bay children in their own homes

Thirteen-year-old Collin Jackowski usually lights up when he hears music.

Yet on one scary day in February, even one of his favorite country artists couldn’t bring a smile to the face of the San Jose boy.

That’s when his shift nurse Heather Trail knew something was wrong.

“He really enjoyed listening to Merle Haggard,” says Trail. “So when we noticed that he wasn’t really responding (to the music), I helped the parents take him into the hospital.”

It turned out to be an urgent medical situation for Jackowski, who suffers from a severe form of cerebral palsy known as spastic quadriplegia (which means it affects all four of his limbs). Trail’s ability to spot the situation early on — due to both her training and experience — may just have saved Collin’s life.

“Even though he is nonverbal, he does smile and laugh and has his own way of communicating,” says Trail. “He’s just a very bright and happy kid.”

Trail came to the Jackowski family through the Salinas-based Coastal Kids Home Care, a nonprofit organization that works to meet the needs of medically fragile children in the comfort of their own homes.

Coastal Kids has been nothing short of a game-changer for Collin’s family, who say that the organization’s responsiveness and attentiveness really set it apart from many other agencies.

“I think it was so easy, when we had other providers, to feel marginalized,” says Collin’s mom, Julie Jackowski.

Through the Mercury News’ annual Wish Book campaign, which seeks money for the most vulnerable in our communities, Coastal Kids Home Care is hoping to raise $50,000 to provide services and help for families like the Jackowskis who are caring for medically fragile children in Santa Clara County. The goal is to improve the in-home medical care for some 350 children dealing with cancer, cerebral palsy, cystic fibrosis, congenital conditions and other complex medical situations.

The agency plans to use the donations to establish a small administrative office in Santa Clara to support the nurses, social workers and therapists in the area. Currently, those workers are operating out of the Coastal Kids Monterey County office.

Coastal Kids got its start in 2005 after Margy Mayfield — who spent more than two decades as a pediatric nurse — decided to find a better way to take care of children living with serous illnesses. Her experience taught her that these kids simply wanted to be at home — not at a hospital. So she co-founded what is reportedly California’s only nonprofit pediatric home health care agency.

“I had worked at several for-profit and nonprofit agencies, and it was always just frustrating to me that (pediatric departments) were always seen as the program that nobody really liked,” says Mayfield, Coastal Kids’ executive director. “I just use to dream about, ‘What if we built an agency just for kids that was a nonprofit and we fundraised for ourselves, instead of having it go into the bucket, and we didn’t have a huge IT department and HR department, but we kept our overhead low? Could we make it work?’”

The answer has been a resounding yes. The organization has grown every year since it got its start 17 years ago. Coastal Kids now cares for some 650 children and infants in Santa Clara, Monterey, Santa Cruz and San Benito counties every year. Notably, the agency “is the only specialized provider of pediatric palliative and end-of-life care in these communities,” according to Coastal Kids’ website.

Coastal Kids came into the Jackowskis’ lives at the right time, as Collin’s older brother Ryan — who had been a huge help in providing necessary home care — enlisted in the Navy about a year ago.

“Especially during the pandemic, he became a primary caregiver,” says father Matthew Jackowski.

What immediately appealed to the family about Coastal Kids was that it wasn’t a “one size fits all” organization, but rather it adapted to each situation.

“We have a custom care plan that we have worked out with his doctors,” says Matthew Jackowski. “Coastal Kids understands that.”

Collin’s parents still provide the majority of his care, while receiving 40 hours per week of in-home assistance from Coastal Kids. That allows them to get a bit of a breather —  to run an errand or have a little “me” time – while knowing that Collin is being well cared after.