Young family faces financial ruin trying to protect their baby from Covid


“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 haven’t been working and fear that it could introduce coronavirus 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.

Brandi sits between Elijah and Isabella. Their parents fear it's not safe for any of them to play with friends.

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.

Brandi, here in the ICU as a baby, has already beaten expectations.

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.”

Covid-19 is increasing demands on nonprofits. Here are three ways you can help this Giving Tuesday

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

Lusk said Garcia was preparing to go back to work earlier this year at a factory job following recovery from a car accident in October 2019. She said doctors cleared him to go back in February, but then the pandemic struck and he decided to stay at home. Lusk said she left a home health job in April to avoid exposure to the virus.

The family says they get 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.

Brandi's extensive medication requirements are mostly covered by Medicaid.

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.”

Isabella and Elijah can't go to school or play with other children so they don't risk exposing Brandi to Covid-19.

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.

Both Jessica Lusk and Dylan Garcia say they had no choice but to stay home to protect their daughter.

“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.”

CORRECTION: A previous version of this story stated Dylan Garcia said he stopped working in April. Jessica Lusk has subsequently said that Garcia stopped working at the end of 2019 after a car accident. He received medical clearance to resume working shortly before the pandemic began, Lusk said, but decided not to out of caution for Brandi.



Source link

Leave a Reply

Your email address will not be published. Required fields are marked *