Two-year-old Melianna Huey’s eyes water as she gasps for air. Her mother, Brianna Huey, puts her mouth over her daughter’s small, brown lips and blows. Hard. The toddler is choking on apple juice, and Huey is trying to clear her airway.
Minutes before, Huey’s boyfriend, Malcom Williams, helped her 7-year-old son Eastahn breathe through an inhaler. The Hueys are at the McDonald’s at 7515 West Bell Road in Peoria, half an hour after meeting with Congressman Trent Franks to talk about health care. Twenty-seven-year-old Huey has had her head on a swivel the whole time.
Melianna was diagnosed with dysphagia and has a hole in her throat requiring her to be fed primarily through a feeding tube. Eastahn has sickle cell anemia, which can trigger asthma attacks and pain crises — and, more importantly, cuts his play time short.
Huey is the primary caregiver for everyone, a round-the-clock job. The single mom has spent more time sitting in hospitals than watching her kids play on jungle gyms.
Health care is keeping the Huey family afloat, but the Better Care Reconciliation Act bill in the Senate could dismantle the Affordable Care Act — and by extension, poke holes in the family’s lifeboat.
But Huey won’t sink without a fight.
She brought her two small children and boyfriend to Franks’ congressional office last week with the Surprise chapter of a group called Indivisible.
The band of activists aim to resist President Donald Trump’s agenda and hold Congress accountable, according to their website. The national nonprofit has more than 5,800 chapters across the country, including the Surprise group led by powerhouse Wendy Garcia. Five Indivisible members sat down last week with the District 8 representative and three of his staffers to talk about the fate of health care and Franks’ vote in favor of the House's health care bill in May.
Now, the activists want to stop him from supporting the Senate’s bill working to replace the ACA.
“I’ll do my very best to make sure that the kids, in this district and America, have the kind of system that will bring them the best health care possible,” Franks said.
The Republican lawmaker exchanged handshakes and hugs with the Hueys after the 40-minute sit down, which was recorded on Facebook Live by Garcia.
Franks towered over Huey as she sat on the couch in his front lobby and quickly rattled off her family's medical history. She reached over and unbuttoned Melianna's denim jumper to show Franks her daughter's feeding tube.
“God bless you, baby,” Franks said to Melianna. “God hasn’t forgotten about you.”
The gap between Franks’ and the Hueys' situations are substantial. Franks’ net worth is estimated to be $33.2 million, roughly 31 times the average member of Congress. He told the members of Indivisible that he pays out of pocket for insurance and isn’t happy with his $6,000 deductible and a bill of roughly $2,200 a month for his family of four.
The Hueys, on the other hand, are completely covered by three different insurance policies for the combined 25 different medications they take daily. They've had no stable income for the past five years and rely on government aid to pay for ambulance rides, hospital visits, and daily care.
GOP senators in Washington were still negotiating the future of the health care bill that could dismantle the Affordable Care Act when senators took off for their holiday recess last week, creating uncertainty for families like the Hueys who rely on health care.
If the Senate approves the Better Care Reconciliation Act, it could leave 22 million Americans uninsured in 2026, according to Congressional Budget Office numbers. The immediate effects would alter 15 million Americans’ health insurance next year. A June survey showed that only 12 percent of Americans support the Senate Republican health care bill, according to a USA Today/Suffolk University poll.
Michael Boylan, the chief executive officer for Crisis Preparation and Recovering Inc., a local mental-health care provider, says repealing the ACA could be devastating to Arizonans.
“What will end up happening is the state having to make decisions about who they can cover and who they can’t,” Boylan said.
It may not affect the Hueys immediately, but the family wants to make sure they can keep what they have.
Huey says some nights she gets as little as a half-hour’s rest. She spends most of her time looking after two children with two completely divergent sets of health problems.
Her oldest son, Eastahn, is a bright-eyed 7-year-old who’s quick as a whip, despite missing a lot of school. He loves playing video games in which he races characters such as Sonic the Hedgehog and the Minions from Despicable Me. He longs to play outside and and wants to be a hero someday — like his mom or the characters he sees in his games.
Eastahn takes 12 kinds of medications multiple times a day to remedy symptoms from his sickle cell anemia, an enlarged spleen, severe asthma, high blood pressure, and allergies. This combination of illnesses has prompted three different ambulance rides from Desert Spirit School to the hospital this year alone.
Locals might recognize Eastahn’s big brown eyes and toothy smile from Phoenix Children’s Hospital posters at Wal-Mart or Costco. He received a Nintendo Wii gaming system from Make a Wish. Despite these small perks, Huey says her son would give anything to just be healthy and play outside.
Last year, Huey took Eastahn to a splash pad to cool off and have fun. Within 10 minutes they were headed to the hospital where he spent 12 days, nearly missing his kindergarten graduation. Eastahn misses an average of 10 to 15 days of school each month due to illness. Huey said as Eastahn gets older he’s realizing he can’t do what other kids can and asks why he is different.
“I try to make everything positive,” Huey said. “I used to cry a lot because I didn’t understand why I’m left to take care of two sickly children. Things that normal kids do, my kids can’t do.”
Huey’s daughter, Melianna, is clever for a 2-year-old.
When Melianna sees her brother sipping a juice box or eating a French fry, she’s quick to reach over and take one for herself, though the hole in her throat makes it nearly impossible for her to take down food.
When Huey or her boyfriend stop her, Melianna immediately devises a new plan. Looking for a way around the adults; sometimes this means darting around them, climbing over or under obstacles, or charming a different adult into getting the forbidden French fry treasure for her.
In short, Melianna demands constant attention.
“She’s my shadow,” Huey said of Melianna, who follows her mother everywhere, including the bathroom.
Just one month shy of her third birthday, Melianna keeps up with her brother. She plays nice until she reaches her limit and then the kicking starts. She has started developing behavioral problems that cause her to have occasional violent outbursts — including throwing her brother’s Wii into water. To work through these early signs of autism, Melianna has three different behavioral specialists visit her at home weekly, and a fourth occupational-and-speech therapist will be added to the mix next month.
“I get so emotional,” Huey said, describing her family’s everyday life. “I need help. I need help so bad.”
Huey herself suffers from fibromyalgia, neuropathy, complex regional pain syndrome, chronic migraines, asthma, allergies, restless legs syndrome, and has a neuro-stimulator in her spine that has been replaced three times in the last five years.
These are all a result of a pneumonia vaccine she received at St. Joseph's hospital in July 2012, Huey said. The reaction to the vaccine created an infection that led to part of her muscle and tissue in her right tricep being surgically removed, she said.
Since then, nothing has been the same.
“I always put my issues to the side,” Huey said. “Right now, I’m in a lot of nerve pain but I have to suck it up. I can’t be depressed or sad because my children only have me to depend on.”
Before her own pain started, Huey worked as a caregiver for special-needs children and adults as well as seniors with assisted living. After missing too much work because of her chronic migraines and childcare responsibilities, she’s remained unemployed and relies on government programs and financial help from family.
Many conservative lawmakers want those on Medcaid to just get a job.
But health care provider Michael Boylan says repealing the ACA will make it harder for families below the poverty line to stay on their feet with a job because if they earn enough money, they’ll be kicked off of Medicaid and moved onto a more expensive plan. Huey is no exception.
“I’ve seen scenarios where a person is earning like 10 or 15 or 20 bucks more than the threshold, and they’re out of the program,” Boylan said. “We basically are trapping people because we’re not being as thoughtful and generous as we should be around health care issues.”
This puts Huey in a lose-lose situation. If she gets a job and gets off of her current health care, she could have much higher premiums, deductibles, and copays if the Senate bill passes.
“It puts me in a position of, 'What do I do?'” Huey said.
The Hueys have something of a fairy godmother: Wendy Garcia.
The 47-year-old president of the Indivisible chapter in Surprise has made health care — and, it seems, the Hueys — her project. She’s a feisty mother of two with a “nevertheless, she persisted” tattoo gracing her right forearm.
Huey and Garcia get along. Although they just met, they say “I love you” to each other. They share hugs and napkins to wipe their tears when they talk about their children.
Garcia hopes to help Huey replace her car, which needs a new transmission and leaks oil. Huey hopes to help Garcia make her point that every child deserves to have access to the medical care they need.
Health care is everything to these two mothers.
After losing her daughter Sarah to a serious heart defect only 30 days after giving birth, Garcia found herself in $998,000 of debt from hospital bills. Her insurance waited almost a full year to pay off the bills, leaving Garcia emotionally and financially destroyed, she said.
Garcia asked her doctor the same questions Huey finds herself repeating often: “Why did this happen? Why me?”
Garcia’s doctor’s answer: That’s just how the sun came up that day.
Now the sun could be setting on the health care access for approximately 650,000 Arizonans, including 160,000 children, according to a Children’s Action Alliance study.
That’s why Garcia is passionate and persistent about protecting Arizona children.
When she met with Franks, Garcia asked the lawmaker how many children in District 8 would be affected. Children like Melianna and Eastahn.
Franks told her he did not know. He didn’t have that data.
“I truly believe my vote was absolutely the best thing I could do for children in this country,” Franks said.
He said the House's American Health Care Act "isn’t the best we can do. I don’t believe it’s perfect at all. All you have to do is look at my quotes in the media and I find a lot wrong with it.”
“But you voted for it,” Garcia said.
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“It’s better than what we have right now,” Franks said.
But what we have right now works for Eastahn and Melianna, two kids caught in the cross-hairs of a political battle, whether they know it or not.
On the floor of Franks’ office, Eastahn, the 7-year-old, happily chatted about what he wants to do when he grows up. He takes after his mother. He wants to be a caregiver.
“When I grow up I wanna take care of kids and Jesus and stuff,” Eastahn said. “I’ll save the world. So I can protect and be a hero.”