Heidi Tunea shows off the feeding tube used by her 5-year-old son, Danyel Velezís. Velez was born with a rare genetic disorder known as GRIN2B, Lennox-Gastaut syndrome and cerebral palsy. (Rachel Aston/Las Vegas Review-Journal/TNS)
LAS VEGAS — Heidi Tunea carried her 5-year-old son, Danyel Velez, up the stairs to the living room of her East Las Vegas home and placed him on a couch.
The boy faced forward, lying on his back, his body shaking from a seizure linked to a rare genetic disorder known as GRIN-2B, which causes intellectual disabilities, cerebral palsy and other neurological problems that make it difficult for him to digest food, requiring him to be fed through a tube that leads to his intestines.
Tunea recalled a terrifying time for the family when he suffered liver failure and a form of pneumonia.
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“We almost lost him in 2020,” she said. “Luckily, he’s my little hero. He pulled through.”
“But that’s what this disease gradually does,” said Tunea, who stood next to an IV stand holding a bag of the white liquid that nourishes Danyel. “So it’s like the seizures, the GI tract, the heart, everything. So it kind of triggers a whole domino effect.”
Danyel, who cannot walk or talk, is one of the complex health cases managed by 1Care Hospice, a children’s hospice that oversees the home-based care of about 190 children in the Las Vegas Valley when staying in a hospital room isn’t feasible, let alone affordable. His brother, Jakob Velez, 8, is also in the 1Care program.
Comprehensive comfort care
The program, known for providing palliative care to children and young adults who retire at age 21, is called “hospice” in the most modern sense of the word, said Courtney Kaplan, director of community affairs for 1Care. The program is 100 percent covered by government-funded Medicaid.
The U.S. government’s National Institute on Aging states on its website that “palliative care provides comprehensive supportive care and support to the family, but in palliative care attempts to cure the person’s illness are stopped.”
“Palliative care is provided to a terminally ill person whose doctor believes he or she has six months or less to live if the illness runs its natural course,” the institute says.
But at 1Care’s youth hospice, palliative care is provided to children who are seriously ill but not necessarily terminally ill and can receive treatment while living with their parents and siblings, Kaplan said.
The Mayo Clinic in Rochester, New York, defines palliative care as “specialized medical care that focuses on providing relief from pain and other symptoms of a serious illness” and “does not depend on whether your condition can be cured,” according to its website.
This modern approach to palliative care began in 2010, with a provision of the federal Affordable Care Act that gave children with challenging physical and mental conditions the option to receive government-paid medical and behavioral health care (and psychological and spiritual counseling for family members) at home, according to Kaplan.
“When it comes to palliative care, you usually have to choose whether you want aggressive treatment, whether it’s chemotherapy, radiation therapy or any other kind of more aggressive treatment to sustain life,” Kaplan said. “If you want to continue doing that, you can’t ask for palliative care.”
However, the Affordable Care Act provides an exception for children, allowing them to receive those aggressive, curative — and expensive — treatments and powerful medications while they are medically fragile in a hospice setting, Kaplan said.
1Care also accepts payments through private and employer-based health insurance, though most children’s medical expenses are covered by Nevada Medicaid based on family or patient income or the state’s Katie Beckett Eligibility Option, which covers expenses for children under 19 based on their complex medical needs rather than income, she said.
In addition to 1Care, two other companies in the Valley offer similar services, Covenant and ProCare, according to Rabea Alhosh, a pediatrician and assistant professor of pediatrics at the Kirk Kerkorian School of Medicine.
“Most of our patients are not terminally ill,” said Alhosh, who works with Covenant. “The difference between palliative care and hospice is that palliative care helps them overcome illnesses that may not lead to premature death. Some of these children may live for years, others have graduated from our program.”
Kaplan said the list of diagnoses that qualify children for government-subsidized hospice care includes cancer, uncontrolled seizures, heart conditions and neurological problems similar to what Danyel is experiencing.
Many of them have genetic disorders, seizure disorders, cancer, leukemia, brain tumors, hydrocephalus (water on the brain) and brain damage from lack of oxygen after near-drowning, Kaplan said.
“Many of our children are on the transplant list, waiting for kidneys, livers and hearts,” he said.
Children remain in the hospice program “until they graduate because all their symptoms have been controlled and they no longer qualify for our services” or their parents withdraw them, she said.
Many children move in and out of the service as needed, while “a lot of our kids drop out of the service because they’ve improved,” Kaplan said.
Helping families cope
1Care’s home-based palliative care for Valley youth includes a doctor who conducts monthly in-person visits with a nurse and performs a head-to-toe assessment of each child to see if they need, for example, physical therapy.
“Instead of this patient having to go out into the community and wait sometimes several months to get something, our physicians can write referrals from home and provide services to the home,” Kaplan said.
The hospice includes a social work department that sends workers to conduct social needs assessments of families, some of whom “have just received the worst news they’ve ever heard, that their child is terminally ill,” Kaplan said.
“Not only will you have to deal with the financial burden, but now your heart is broken, isn’t it?” she said. “And you still have to work and keep your family together.”
Social workers then connect families with resources available at local foundations and government agencies, such as Clark County rental assistance, she said.
Behavioral therapists, medications and access to medical equipment such as specialized beds, leg braces and wheelchairs are also provided, Kaplan said.
“Some of the medications can be quite expensive, but our program is all-inclusive, so we can take care of the medications,” she said.
“Loss is never easy”
While caring for children who may live long after leaving the program, staff members also experience the deaths of those in their care, Kaplan said.
The program’s bereavement department communicates with families of children in hospice who have died at least once a month for up to 13 months, and arranges for grieving parents and siblings to speak with a social worker, nurse, grief counselor, or any 1Care employee who was involved in the child’s life.
“We probably average one or two terminally ill children a month,” Kaplan said. “Some months none, other months three. And most of them are at home.”
In one case in May, the parents of an 8-year-old boy in the program who had a rare form of liver cancer removed their son from hospice care and admitted him to a hospital to manage his symptoms.
Kaplan, who knew the boy’s family, was in the room when he took his last breath.
“Once you create a bond and you realize that you love these families, I wouldn’t have missed it for the world,” she said.
“Loss is never easy,” she said. “But there is a place to put it. And when you consider the gratitude part of being in someone’s life, a parent, a child, there really is no better intervention.”
‘Like an army behind you’
Tunea said she is grateful to 1Care Hospice and the people who have helped both Danyel and his older brother, Jakob, who suffers from a chromosome 2 deletion, which the National Library of Medicine defines as “a chromosomal abnormality that occurs when a copy of the genetic material located on the long arm of chromosome 2 is missing” and is often associated with intellectual disabilities and behavioral problems.
Jakob, who likes to play with graphics on a computer tablet, experiences autism-like behaviors and requires a lot of speech therapy, developmental therapy and physical therapy, Tunea said.
She said she also learned that something both boys share is a rare genetic heart condition that could cause them to go into cardiac arrest.
For her children, 1Care’s palliative care program helps “with medication, regimens, pain management and the emotional part of it,” Tunea said.
Rather than an “end of life” concept, Tunea sees it “more as a team effort, a support and care system, like an army behind you because it’s too hard to do this on your own.”
“We are a strong family, but I am even stronger because I have that team behind me and they are willing to do anything.”
© 2024 Las Vegas Review Magazine
Distributed by Tribune Content Agency, LLC
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