How parents who were caring for their parents can finally take a breather by working from home
The George Mark Children’s House in San Leandro, California, is America’s first pediatric palliative care facility, extending a helping hand to parents in care.
SAN LEANDRO, Calif. – Daniel Lockwood’s parents said he squealed with enthusiasm throughout the last hour of the four-hour drive to George Mark Children’s Home on June 1.
When Sarah and Kevin Lockwood arrive, they help their son, who has several diagnoses, including cerebral palsy, get into his wheelchair and unload bags of clothes and medication.
“The last 24 hours have been so exciting,” Kevin Lockwood said as 14-year-old Daniel urged his parents inside.
The nurse leads Daniel and his family to an enchanted forest themed bedroom. Between cartoon-like murals, a spa center, lush gardens, and a packed schedule of music, arts and crafts, gardening, and other activities, this property feels like a family resort. And that is, in a sense. But to get there, the family has to belong to a club they didn’t really want to be a part of.
Being here at George Mark Children’s Home in sunny California, where winding paths are lined with lavender and a revolving door of entertainers and volunteers, means your child is either living with a life-limiting condition or dying.
There are mainly two types of families who come to George Mark. Some come seeking respite, leaving their medically frail but otherwise stable children in the care of skilled nurses while their parents leave for a much-needed break from 24-hour care. Some come for end-of-life care for children, a rare and essential service that changed the trajectory of CEO Shekinah Eliasen’s life. These parents can stay with their children at George Mark, and the patient’s siblings can spend their last days together as well.
“I believe that these types of services should be part of the pediatric system,” Eliasen said, adding that families never see bills for visits. Her son Lars suffered from seizures after birth and died at George Mark’s 21 days after birth. “We are working hard to raise money to keep this house afloat.”
Like her, there are many families facing a devastating diagnosis with no clear path forward. As Eliasen says, “It’s difficult for us as a society to talk about the death of a child or about children living with incurable diseases.” Without extensive pediatric palliative care and resources, some families watch their children die in the hospital. There are also people who are never able to find peace of mind and are quietly living a life of caregiving. Some people do both.
“The stress and strain on these families is immense,” said Jonathan Cotter, who co-founded a similar facility in Arizona. “Sleepless nights, exhaustion, death and death. Trying to coordinate 11 different professionals and all the care that goes into caring for these children.”
Pediatric palliative care isn’t all doom and gloom, Kottor said. At George Mark, surrounded by lemon trees and animal statues, 24-year-old Paul Tagineau is cosplaying as a radio host. He introduces all volunteers and staff to an imaginary audience. Nurses help 17-year-old Annie Long swim in a pool while Taylor Swift’s “Delicate” plays. Daniel creates a lightsaber on a 3D printer in the craft room. The atmosphere is homely rather than clinical, despite a 4:1 nurse-to-patient ratio and hidden oxygen hookups in every bedroom just in case.
“This is about living life to the fullest,” said Cotter, providing families with the caregiving support they need “so that parents can be parents” during life’s most difficult moments.
“I’ve never seen anything like it.”
When Eliassin’s son Lars was born with a severe brain disease in 2012, doctors knew he wouldn’t live long. Eliassen and her husband took Lars to George Mark, where he spent the last nine days of his life. Their family received 24-hour care support, free counseling and space to hold a celebration of life after Lars’ death.
“The staff, the nurses and the team have been really helpful to me,” Eliasen said. She and her husband remained connected to George Mark over the years, and almost 10 years later she returned as CEO.
George Mark was the first facility in the United States to offer this service to families in 2004, and was modeled after a similar facility in the United Kingdom, named after founder Kathleen “Cathy” Nicholson Hull, who spent her career as a clinical psychologist watching children die in hospital rooms. Hull understood that these families needed a place to return to while their children were alive, and a more peaceful place to grieve when their children died. The George Mark and other similar homes have just 10 bedrooms to avoid a clinic-like feel.
Many of Georgemark’s respite families had never been away from their children even for a night before their first stay, Eliasen said. That also applies to the Lockwoods family, which includes six children, including Daniel. Even before they adopted Daniel as a toddler, they knew he had epilepsy and cerebral palsy. He was later diagnosed with autism, dysphagia, and attention deficit hyperactivity disorder. He will require 24/7 care for the rest of his life, including assistance with eating and toileting.
The Lockwoods say they can sometimes take an hour or two off during their date night. But it had been years since they had been able to spend a weekend together, until they found George Mark in the spring of 2025.
“If a child with ADHD who has no impulse control is in a wheelchair, it’s really dangerous,” says Sarah Lockwood. “As he got older, it got harder in a way. We thought it would be a little easier.”
Angela Dobkin, another parent who uses George Mark for respite, said her eldest daughter Abigail, 20, has Lennox-Gastaut syndrome, cerebral palsy and a seizure disorder. When Abigail is at George Mark, Dobkin says, “We have time to reset.” She sleeps in, goes out to dinner, watches movies, and spends time with Abigail’s siblings. “So they have my full attention.”
“This is a very unique model,” Dobkin says. “I’ve never seen anything like it.”
It’s also a different experience for the staff nurses. Antoinette Mincey, Director of Clinical Programs, has worked at George Mark since 2011. Although her staff knows their patients well, she says the work can feel emotionally overwhelming.
“You might have a child who’s dying, and then you have to walk out the door and go take care of a respite child who’s laughing and fussing, and you can have the respite of your life,” Mincey says. “My self-care is going home and hugging my kids a little tighter and spending some family time with them.”
We don’t like talking about the death of children. It’s hurting families.
Cotter, who co-founded Ryan House shortly after George Mark opened, dreams of a world where every community has options like George Mark. His son, Ryan, was diagnosed with spinal muscular atrophy as an infant, and doctors told him he wouldn’t live past the age of two. Ryan lived to be 17 years old.
“His care quickly became very intense,” Cottle said. The Cotts lived in London when Ryan was young, and his medical team suggested he rest at Helen Douglas House, a former pediatric palliative care facility.
“We were told this was a pediatric hospice home,” Cottle said. “When we heard the words ‘pediatric hospice home,’ we immediately rejected the idea because we thought it was death, dying, and giving up.”
Words like “hospice” and “palliative” often scare families, says Dr. Justin Baker, director of quality of life and pediatric palliative care at Stanford University’s Division of Children’s Medicine. The biggest barrier to improving the quality of life for children with complex medical needs, he says, is “how difficult it is to have these conversations.”
However, some hospitals have pediatric palliative care teams that work with families to experience the “what ifs” and help them make medical decisions. Baker argues that the growing number of children with serious medical complications calls for more such specialists. He says this is a challenge for the entire pediatric field because once children are discharged from the hospital, families don’t have the support they need at home.
“We all hope that every child diagnosed can overcome their disease and find a cure,” Eliasen says. “But unfortunately, that doesn’t always happen. So my biggest wish is that more people are aware of the reality that not all children will survive their diagnosis. That’s very sad and difficult. And that we can help build support systems for families and children going through that.”
Scalable system for pediatric palliative care homes
Cotter says her family first tried Helen House when the fatigue became too much. Not only was the son well cared for, the home provided bereavement support and an opportunity for the family to cope with anticipatory grief.
When the family moved back to Arizona in 2003, they couldn’t find anything similar because it didn’t yet exist in the United States. That’s when the idea for Ryan House was born.
After Ryan’s death in 2018, Kotter pivoted to full-time pediatric palliative care advocacy. Since then, he founded the American Pediatric Respite Home to track and advocate for other similar facilities across the country, and the National Pediatric Palliative Care Home Center to address needed policy and reimbursement barriers in the field. Iowa’s first pediatric palliative care center was recently approved, and Mason’s Lighthouse is currently fundraising for construction. Cotter said the license is the scalable model he’s been aiming for. He is already in talks with lawmakers in seven other states to seek approval.
George Mark’s largely philanthropic-funded model is clearly not sustainable, Eliasen said. That’s why she’s partnering with Baker’s team and other Bay Area hospitals, hospices and medical centers through The Holding Co. Co-Lab. At the Co-Lab, pediatric palliative care experts collaborate to find better funding models and improve outcomes for sick children and their families.
“We knew that by coming together we could better care for these children,” Baker said.
Eliasen added, “To make this kind of care scalable, our community beyond medical centers, hospices, and community-based care will need to work together. I’m excited for the future.”
“It means a lot to me.” Children with disabilities create memories that last a lifetime
At George Mark’s, while the Lockwoods help calm Daniel down, Paul sings Broadway show tunes with a performer dressed as Princess Aurora in the game room down the hall. Paul is visually impaired due to cerebral palsy and has a passion for music. He carries a radio and karaoke equipment with him most of the day, and staff and volunteers alike look forward to his impromptu concerts. Paul says the people he has met at George Mark are like family.
“I appreciate how much they care about me,” he says. “It means so much to me. This is the moment of my life.”
This will be Paul’s last retreat, having visited George Mark several times since 2017. The facility cares for children up to their 25th birthday.
“The transition to adulthood is difficult,” says Dr. Amy Porter, a physician and researcher in the Division of Supportive and Palliative Care at Massachusetts General Brigham for Children. Aging through such programs “people care about their children from the time they are infants, because they recognize that this care is a lifelong endeavor for themselves and their children.”
The Lockwoods have 10 more years to go before they have to worry about what life will be like without the respite care provided by George Mark.
Once Daniel’s belongings were unpacked and a nurse explained his medication and feeding routine, he happily headed to the wheelchair-accessible back play area. His parents breathed a sigh of relief and left for Cabo San Lucas to celebrate their 27th wedding anniversary.
“This means a lot to us because we can actually mentally unplug and disconnect from all the fear and worry about caring for him,” Kevin Lockwood says. “This is the only time you can trust that everything is in good hands, and even if you lose cell phone reception, it will be fine.”
Madeline Mitchell’s role covering women and the care economy for USA TODAY is supported by a partnership with Pivotal and Journalism Funding Partners. Funders do not provide editorial input.
Contact Madeline at: memitchell@usatoday.com and @maddiemitch_ At X.
