DALLAS (CBSDFW.COM/CNN) – Trying to maneuver the world during a pandemic, with a child in a COVID-19 high risk group, has North Texas parents Jessica Lusk and Dylan Garcia dealing with what they call “unbearable stress.”
Until just days ago the pair spent every second worrying that in trying to keep their youngest child safe from the novel coronavirus, they might lose their home and hurt their other children. And their efforts still might not be enough.
“Is it better off staying at home, or is that going to end up getting us put in a homeless shelter where she’s at more risk?” Garcia said of his 3-year-old, Brandi.
Fear is nothing new for the young couple, as Brandi has an extremely rare metabolic disorder that requires round-the-clock care and makes her vulnerable to any kind of virus.
She’s already a walking miracle. Most children with her condition don’t live past the age of one.
But the pandemic has made it even harder to keep her alive. Garcia and Lusk left their jobs in April to stay home to care for their children and reduce the chance of coronavirus getting into their home.
They’re now thousands of dollars in debt and face eviction at the end of the month.
Brandi’s parents are like so many people with a vulnerable family member who have made huge sacrifices to protect them for months and months — and who are looking at many weeks more as COVID-19 continues to spread.
But it’s hard to explain that to Brandi’s brother and sister who can’t safely go to school or even be around other children. Young friends hang on their apartment patio railings and call for Isabella, 5, and Elijah, 6, to come out to the playground next door. But it’s too risky to say yes.
“We try to explain it to them,” said Garcia, 29. “They’re like, ‘Oh, well I was good today. I didn’t do nothing wrong.’ It’s like, I know you didn’t do nothing wrong. It’s just… you’re not able to go outside.”
Brandi has carnitine-acylcarnitine translocase (CACT) deficiency, a serious condition where her body cannot use certain types of fats as a source of energy. She must be fed through a tube in her stomach every few hours and she’s on a long list of expensive medicines.
Her body has almost no reserves to fight a virus.
“Any acute illness could be deadly for her,” said Dr. Luis Umaña, a pediatric genetic and metabolic specialist at Children’s Health in Dallas and assistant professor at UT Southwestern.
“COVID is so contagious and so widespread, that is at the top of our list of things that she could easily contract,” said Umaña, who is Brandi’s doctor. “For other ones, I mean, she gets vaccines right now. We don’t have a vaccine for the coronavirus yet — at least available.”
Umaña said fewer than 1 in 250,000 babies are born with CACT deficiency and it requires an “overwhelming amount of effort” to treat, even during normal times. “She will never be really out of the woods,” he said. “Any time in her life something could go wrong, and that could be it for her.”
Families like Brandi’s have found themselves in a “no-win situation” during the pandemic, Umaña observed. “They would have to take the risk (of working), or not be able to afford their basic needs.”
And while Umaña believes Brandi could benefit from the coronavirus vaccines that are now seeking approvals, Lusk and Garcia are hesitant to commit until they see how children with similar needs are affected.
Days To Christmas… And Eviction
Garcia left his factory job in April and Lusk left a home health job around the same time. The family gets by on $414 per month in unemployment benefits plus $305 in food stamps. Medicaid helps pay for most of Brandi’s medicine and treatment, as well as at-home nursing care for up to 16 hours a day.
The family says they’re about nine months behind on rent and $2,000 behind on utilities. The only reason their lights are still on is because Brandi has a medical condition that requires electricity to power her feeding pump. “I’ve sold everything in my house pretty much to try to raise money, to pay one bill, to pay partial bills, to do anything that we can,” said Lusk, 28.
The young couple are clearly distressed when they mention their kids asking about Christmas. But they only focus on a different day in December — the final one, when they say they’re worried about losing their home.
“We’re not even thinking about Christmas presents,” said Garcia. “We’re thinking about a place to stay,”
“They’re not going to have a Christmas,” Lusk added, matter-of-factly. “They have nothing.”
Dallas County has seen a dramatic increase in COVID-19 cases in the past month, like in other major cities across Texas. The couple said they’ve looked for work they can do from home, but without having formal educations, they’ve come up short.
With no family who can financially or physically support them, the worst fear for Garcia and Lusk is being evicted, moving into a homeless shelter, and having to send Brandi back into the hospital where she can be treated. When Brandi was first born, her parents lived with her at the hospital for two months and could barely see their other two kids.
“The last thing I’d want is to have to go back to doing that,” said Garcia.
“Or not being able to see her and then she’s in a casket,” added her mom.
The couple said they just try to take one day at a time and pray the virus will “go away.”
“The only hope we got is the fact that we still do have her. She still is here,” said Garcia. “We’re still with her, now.”
A fundraising page since set up to accept donations to cover food, rent and bills for Dylan Garcia, Jessica Lusk and their family has raised more than $250,000.
(© Copyright 2020 CBS Broadcasting Inc. All Rights Reserved. The CNN Wire™ & © 2020 Cable News Network, Inc., a Time Warner Company contributed to this report.)
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