A $250,000 challenge grant from the Norman and Ruth Rales Foundation, matched by more than $250,000 from individual donors, has allowed the Pediatric Palliative Care Program at Johns Hopkins Children’s Center to expand its crucial support for young patients who have serious medical challenges and their families. The funding will dramatically boost the palliative medicine team’s ability to provide care beyond the hospital setting.

“We are very grateful to the Rales Foundation for their generous donation and for inspiring other donors to help fund our specific goals to deepen our outpatient program,” says Renee Boss, Rembrandt Foundation Professor of Pediatric Palliative Care and the program’s director.

Among those goals:

• Expand outpatient services, including hiring the program’s first outpatient nurse and establishing a weekly in-person clinic (because of COVID-19, the clinic has been virtual).
• Establish a home visit program to support families caring for children with challenging conditions and help keep them out of the hospital.
• Launch a program to reach deep into the medically challenged child’s community to help teachers, principals and others create a supportive environment.

Thanks to the grant, outpatient nurse Katie Ford recently joined the pediatric palliative care team. Program manager Cora Welsh says Ford’s presence has been “life-altering in how it’s helped us better serve the kids in our outpatient world. She has a background in hospice, palliative care and home care, so she can really provide families a lot of guidance,” Welsh says.

“I’m absolutely thrilled,” says medical director Melanie Brown, a palliative care physician, who had been the outpatient clinic's sole medical provider. “Not only is Katie helping with the clinic, she is helping hospitalized children and their families transition from hospital to home.”

Jossalyn Taggart, whose now 7-year-old son, Noah, has severe cerebral palsy, says Brown and the palliative care outpatient program “have been a godsend.” A single mom, Taggart says she often jokes that she needs a “house manager.”

“When you’re caring for a special needs child on your own, you just don’t have time to do everything. And the first thing Dr. Brown asked me was what did I need?” she says.

Taggart needed referrals for doctors and assistance filling out application forms for Noah’s special insurance program. She needed a new medical bed, bath seat, comfy chair and travel stroller because Noah was growing out of the old ones. To her surprise and delight, palliative care made all those things happen, she says.

“But one of the biggest things they help with is communication with doctors,” says Taggart, who meets virtually with Brown every month. She says team members even ran interference when she decided to allow Noah, who gets most of his nourishment from a feeding tube, to occasionally eat ice cream and other pureed treats despite his pulmonologist’s fears it could cause him to aspirate.

“He’s been through so much, and it gives him such pleasure,” Taggart says. “While my little man is here, I want him to live, and Dr. Brown understands that. She is my second — and often my first — opinion on everything.”

The Norman and Ruth Rales Foundation is dedicated to supporting children and families facing challenging circumstances by creating opportunities for them to realize life’s potential. The foundation strives to advance the legacy of Norman and Ruth Rales, two individuals from modest means who built an extraordinary life together based upon values of integrity, compassion, hard work and giving back to others.

“It is an honor to support this meaningful program and to know that our contribution and the match funds are enabling critical expansion of services and supports for children like Noah,” says Josh Rales, president and trustee of the Rales Foundation. “My parents, Norman and Ruth, loved children, and it would warm their hearts to see the difference that this program makes in the lives of children facing serious medical challenges, and their families.”

Read more about the palliative care team at Johns Hopkins Children's Center.