Kristi Jantz calls her son “a blessed baby” because of all the people praying for him.
Eli Jantz is a lot like other 2-year-old boys: He loves the outdoors, enjoys being the youngest of four and will sing and dance to the beat of any music he hears.
But there are days when Eli only wants to lie on the couch. The other morning, he “just broke my heart,” Kristi said, when he walked around the deck three times, then came back to her saying, “Mommy hold you,” his phrase for when he wants to be picked up and held.
Eli rested his head on Kristi’s shoulder, worn out after those three trips around the deck.
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“He probably doesn’t know what it’s like to feel good. He’s been sick his entire life,” Kristi said. “It’s just a day-by-day battle. One day at a time you focus on the joys and beauties and sicknesses of today and you don’t think about tomorrow, ’cause tomorrow will come soon enough.”
As a baby, Eli was diagnosed with idiopathic neonatal hepatitis – meaning doctors didn’t know the cause of injury to his liver. That has rapidly progressed into pediatric end stage liver disease.
In his two years of life, he has been flown to Kansas City for emergency care, has been tested for heart and lung problems and had a close scare with cancer (the mass ended up being non-cancerous). He spent his first birthday in the hospital in Kansas City, his parents thankful he was alive.
Eli’s liver is limping along now, so he’s inactive on the transplant list. That means he currently is not approved to undergo transplant surgery. However, a liver transplant is inevitable, his parents say.
When Eli gets to Children’s Mercy Hospital in Kansas City, Missouri, he marches off the elevator and heads straight to the lab.
Those trips to Kansas City may be a hardship, but they’re also a blessing, said Kelvin Jantz, Eli’s father.
“He’s going to know a lot more people than most of us ever did, with all the friends we meet,” Kelvin said. “There’s a group of people at Children’s Mercy that will be friends with him forever, probably.”
Eli is getting to know the nurses and other families. One family whose daughter had a kidney transplant learned about Eli’s sickness and offered to babysit their three older children or otherwise help when the family is in Kansas City.
Kelvin says Eli has also changed the way he views people. He used to have a negative view of most people, Kelvin said, but now has seen so many people step up to pray for Eli, including complete strangers.
Strangers have come together to help the Jantz family with their finances.
Kelvin owns a construction company, and the family has poured many of the company’s resources into their son. They’ve also spent their savings on Eli, and re-mortgaged their previously paid off home in order to pay for medical expenses.
In July, the family started a GoFundMe account (https://www.gofundme.com/eliparkerjantz). Since then, they’ve raised more than $27,600 for Eli’s medical expenses.
Kristi said the money has gone out as fast as it’s come in. They’ve used it to pay for Eli’s insurance payments, to catch up on last year’s medical bills, to pay back loans and to pay backed-up mortgage payments.
“We’re so grateful,” Kristi said. “It is just so humbling to even ask for help. We’re people who take care of ourselves.”
Eli’s medical costs are high, and Eli was denied state aid after his first birthday.
The more Kelvin tries to bring in money to cover the bills, the less likely the family is to be eligible for state aid. Kelvin says they’re “stuck right in the middle” of the gap, unable to receive state aid and unable to make enough money to pay all their bills.
Last year, the family had a plan from Blue Cross Blue Shield that they purchased through the marketplace. Premiums cost about $30,000 for the year, but insurance paid out more than $1 million for Eli’s care.
That plan was cut at the end of last year and the family was paired with Medica. Their current premiums are $1,700 each month. It probably will cost about $40,000 for the year for insurance, medical bills and copayments just for Eli, they said.
His nine medications, in addition to dietary supplements, cost about $400 to 500 a month out of pocket. There are also childcare costs for their three older children, ages 8, 6 and 4, since Eli requires so much attention.
When their son grows older, Kristi and Kelvin want him to look at the fundraiser and his medical needs as something that brought the community together.
A ‘sacred gift’
April, Eli’s birthday month, is also organ donation awareness month. Kristi hopes Eli’s story will help make others more aware of the need for organs.
Doctors are trying to keep Eli’s liver going as long as possible, particularly since there’s not much data on how long a transplanted liver will last. Since about 80 percent of transplants are successful, doctors want to ensure that he absolutely needs one before giving Eli a transplant, Kelvin said.
At the same time, Eli will need a new liver eventually. The 2-year-old shows signs of sickness: He’s thin, bruises easily and has visible veins on his face and stomach.
“It’s just going to continue to get worse, not better, until he can get a new liver,” Kristi said.
Toddlers who receive transplants before they can remember often struggle to care for that organ later in life, Kristi said. Because of that, it’ll be up to Kristi and Kelvin to tell Eli about the “very sacred gift” of an organ if he receives one as a child.
Kristi said she’ll tell her son “that you were given a gift, a second chance at life.”