By admin 
SAN LEANDRO, CA − Daniel Lockwood’s parents say he squealed with enthusiasm the whole last hour of their four-hour drive to George Mark Children’s House on June 1.
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Upon their arrival, Sarah and Kevin Lockwood help their son, who has several diagnoses including cerebral palsy, into his wheelchair and unload his bags of clothes and medications.
“It’s been a lot of excitement the last 24 hours,” Kevin Lockwood says, as 14-year-old Daniel urges his parents inside the house.
Nurses lead Daniel and his family to a magic forest-themed bedroom. Between the cartoonish murals, spa center, lush gardens and packed schedule of music, arts and crafts, horticulture and other activities, the facility almost feels like a family resort. And it is − in a way. But to get here, families have to be part of a club that they never really wanted to be in.
To be here, at George Mark Children’s House in sunny California, with the winding pathways lined with lavender plants and the revolving door of entertainers and volunteers, means that your child is either living with a life limiting condition, or that they are dying.
There are mainly two kinds of families who come to George Mark. Some come for respite, entrusting their medically fragile but otherwise stable children to skilled nurses while parents leave for a much-needed break from around-the-clock caregiving. Others come for pediatric end-of-life care, a rare and essential service that changed the trajectory of CEO Shekinah Eliassen’s life. These parents stay with their children at George Mark and can bring the patient’s siblings, too, to soak in their last days together.
“This type of service, I believe, should be part of the system of pediatrics,” Eliassen says, adding that families never see a bill for their visits. Her son, Lars, died at George Mark when he was 21 days old, after he was born having seizures. “We are working so hard to fundraise to keep this house going.”
There are many families like hers who face a devastating diagnosis with no clear path forward, because, as Eliassen says, “It’s hard for us, as a society, to talk about kids dying,” or about kids living with incurable diseases. Without robust pediatric palliative care and resources, some families watch their children die in hospitals. Others quietly live a life of constant caregiving, never getting relief. Some do both.
“The stress and the strain on these families is immense,” says Jonathan Cottor, who cofounded a similar facility in Arizona. “Sleepless nights, tiredness, death and dying. Trying to coordinate 11 different specialists and all the care that goes into caring for these kids.”
Pediatric palliative care isn’t all “doom and gloom,” Cottor says. At George Mark, among the lemon trees and animal statues, 24-year-old Paul Taguinod cosplays as a radio host. He introduces every volunteer and staff member to his imaginary audience. Nurses help 17-year-old Annie Long float through the pool while blasting “Delicate” by Taylor Swift. Daniel creates a lightsaber with the craft room’s 3D printer. It feels homey, not clinical, even though the nurse to patient ratio is 4-1 and there are hidden oxygen hookups in all of the bedrooms, just in case.
“This is about living life to the fullest,” Cottor says, and giving families the caregiving support they need “so that the parents can be parents” during life’s toughest moments.
‘I’ve never seen anything like it.’
When Eliassen’s son Lars was born with a severe brain condition in 2012, doctors knew he wouldn’t live for long. Eliassen and her husband brought Lars to George Mark, where he spent his final nine days of life. Their family received around-the-clock caregiving support, free counseling and the space to hold a celebration of life after Lars died.
“We were just so taken care of by the staff, the nurses, the team,” Eliassen says. She and her husband stayed connected to George Mark for years, and she returned nearly a decade later to serve as CEO.
George Mark was the first facility in the United States to offer this service to families in 2004, and was modeled after similar homes in the United Kingdom after founder Kathleen “Kathy” Nicholson Hull spent her career as a clinical psychologist watching children die in hospital rooms. Hull understood these families needed a place to go while their kids were alive, and a gentler place to grieve when their children died. George Mark and other homes like it don’t have more than 10 bedrooms, so as not to feel like a clinic.
Many of the respite families at George Mark have never been away from their child, even for one night, before their first stay, Eliassen says. That’s true for the Lockwoods, who have six children including Daniel. They knew Daniel had epilepsy and cerebral palsy before they adopted him as a toddler. He’s since been diagnosed with autism, a swallowing disorder and attention deficit hyperactivity disorder. He’ll need 24/7 care for the rest of his life, including help with feeding and toileting.
The Lockwoods say they can get an hour or two of respite on occasion for a date night. But before they found George Mark in the spring of 2025, it had been years since they were able to get away for a weekend, just the two of them.
“When you have a child with ADHD with zero impulse control, and he uses a wheelchair, it gets really dangerous,” Sarah Lockwood says. “It just sort of has gotten harder the older he’s gotten, where we thought it would get a little easier.”
Angela Dobkin, another parent who uses George Mark for respite, says her oldest daughter, 20-year-old Abigail, has Lennox-Gastaut Syndrome, cerebral palsy and seizure disorder. When Abigail is at George Mark, Dobkin says she has “time to reset.” She sleeps in, goes out to dinner, watches movies and spends time with Abigail’s siblings “so they get my full, undivided attention.”
“It is such a unique model,” Dobkin says. “I’ve never seen anything like it.”
It’s a different experience for the nurses on staff, too. Antoinette Mincey, director of clinical programs, has worked at George Mark since 2011. Her staff gets to know their patients really well, she says, but the work can feel overwhelming emotionally.
“You can have a child who is actively dying, and then have to walk out the door and go take care of a respite child who’s laughing and cracking up and having the respite stay of their life,” Mincey says. “My self-care is going home and hugging my kids a little more tightly and really spending that family time with them.”
We don’t like to talk about kids dying. It’s hurting families.
Cottor, who cofounded Ryan House shortly after George Mark opened, is dreaming up a world where every community has a George Mark-like option. His son, Ryan, was diagnosed with spinal muscular atrophy as a baby, and doctors said he wouldn’t live past age 2. Ryan lived to be 17.
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“His care became very intense very quickly,” Cottor says. The Cottors lived in London when Ryan was young, and his medical team suggested they take respite at Helen and Douglas House, the original pediatric palliative care home.
“It was described to us as a children’s hospice home,” Cottor says. “We heard ‘children’s hospice home’ and we immediately rejected that idea because we thought that that was death and dying and giving up.”
Words like “hospice” and “palliative” often scare families, says Dr. Justin Baker, chief of the Division of Quality of Life and Pediatric Palliative Care at Stanford Medicine Children’s Health. The biggest barrier to improving the quality of life for kids with complex medical needs is “how difficult it is to have these conversations,” he says.
But pediatric palliative care teams are there to help at some hospitals, walking through the “what ifs” with families and helping them to make medical decisions. Baker says there should be more of these professionals, because the number of children with significant medical complexity is growing. It’s a challenge for the entire field of pediatrics, he says, because when kids leave the hospital, families aren’t getting the support they need at home.
“We all hope that every child that gets a diagnosis is able to beat it, and find a cure,” Eliassen says. “But that doesn’t always happen, unfortunately. So my number one wish is that more folks knew that there’s a reality that not all children survive their diagnosis, as sad as that is, and as hard as that is. And that we help build systems to support families and children going through that.”
A scalable system of pediatric palliative care homes
When the exhaustion became too much, Cottor says his family tried Helen House for the first time. Not only was his son well-cared for, but the home provided bereavement support and an opportunity for the family to address anticipatory grief.
When their family moved back to Arizona in 2003, they couldn’t find anything like it because nothing similar existed, yet, in the United States. That’s when the idea for Ryan House was formed.
After Ryan died in 2018, Cottor pivoted to full-time pediatric palliative care advocacy. He’s since created Children’s Respite Homes of America to track and champion other like facilities across the nation, and the National Center for Pediatric Palliative Care Homes to address necessary policy and reimbursement barriers in the field. The first pediatric palliative care center license was recently granted in Iowa, and Mason’s Light House is currently fundraising for construction. This license, Cottor says, is the scalable model he’s been working toward. He’s already in talks with legislators in seven other states to get approval.
George Mark’s majority philanthropy-funded model is admittedly not sustainable, Eliassen says. That’s why she’s partnered with Baker’s team and other Bay Area hospitals, hospices and medical centers through The Holding Co. Co-Lab, where pediatric palliative care professionals are working together to find better funding models and improve outcomes for sick kids and their families.
“We knew that we could take better care of these kids by coming together,” Baker says.
Eliassen added, “In order for care like this to be scalable, it’s going to be necessary for our community across medical centers, hospices and community based care to work together. I’m hopeful for the future.”
‘It means a lot to me.’ Kids with disabilities make memories that last
At George Mark, as the Lockwoods help Daniel settle in, Paul sings Broadway showtunes with a performer dressed as Princess Aurora in the game room down the hall. Paul, who has cerebral palsy and is blind, has a passion for music. He carries a radio and karaoke machine with him most hours of the day, and staff and volunteers alike look forward to his impromptu concerts. The people he’s met at George Mark, Paul says, are like family.
“I appreciate them, how much they care for me,” he says. “It means a lot to me. This is the moment of my life.”
This is Paul’s last respite stay at George Mark, after visiting several times since 2017. The facility cares for kids up to their 25th birthday.
“The transition to adulthood is hard,” says Dr. Amy Porter, a physician-investigator in the Division of Supportive and Palliative Care at Mass General Brigham for Children. Aging out of programs like this are “on people’s minds from when their children are infants, because they realize that this caregiving is a lifelong endeavor for themselves and their children.”
The Lockwoods have another decade before they’ll need to worry about what life looks like without the respite care George Mark provides.
Once Daniel’s things were unpacked and his nurses briefed on his medications and feeding routine, he happily set off to the wheelchair-accessible playground out back. His parents breathed a sigh of relief and set off for Cabo San Lucas to celebrate 27 years of marriage.
“It means a lot to us because we can actually mentally unplug, disconnect from any fear, any worry about caring for him,” Kevin Lockwood says. “It’s the only time where we trust everything’s handled, and even if we’re out of cell signal, it’s going to work out.”
Madeline Mitchell’s role covering women and the caregiving economy at USA TODAY is supported by a partnership with Pivotal and Journalism Funding Partners. Funders do not provide editorial input.
Reach Madeline at [email protected] and @maddiemitch_ on X.
This article originally appeared on USA TODAY: Some kids come here for vacation. Others come to die. Either way, parents are grateful
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Reporting by Madeline Mitchell, USA TODAY / USA TODAY
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