A helping hand for Eli

Parents Kelley and Kristi Jantz of Burns with their four children: Eli, held by his father, in front are Connor, Addison and Dominic with his mother. “We are thankful for each day he is blessed with health in spite of his failing liver,” Kristi said. “But we have been advised, and strongly feel like now is the time ask for help.”To look at 2-year-old Eli Jantz, with his sweet little smile and cheerful, energetic personality, it’s hard to imagine he’s in a fight for his life as he battles liver disease.

Despite everything he’s been through and what is yet to come, his parents, Kelley and Kristi Jantz of Burns, stand in awe of what their youngest child has accomplished thus far.

“Nobody knows for sure how much reserve is left on Eli’s liver, which was diagnosed as pediatric end stage liver disease, ” Kristi said. “But, he is proof that miracles do happen. He has achieved most of the normal milestones a toddler his age does, and he has spunk.

“He has lived his entire life being sick, but he’s still strong and happy.”

Born in April 2015, Eli was jaundiced until he was eight months, Kristi said.

Kristi said jaundice, is something she and Kelley knew well because their other children all had it, but unlike the others, Eli’s jaundice didn’t go away.

To treat the condition, Kristi and little Eli were sent home with a bili­rubin light.

When Eli’s jaundice did not go away, Kristi said they were concerned, not only because of that, but also because he was eating every hour day and night and wasn’t gaining weight.

“Eli weighed 7 pounds, 15 ounces, at birth, and when we took him to our doctor, he had thorough examination with ultrasound and blood work.”

Kristi said that about 7 p.m. the same day as Eli’s exam, their worst fears were confirmed. The lab results from the direct belirubin testing showed Eli’s blood test range was almost at 15 milligrams per deciliter.

Normal results of the test should be less than 1 milligram per deciliter, she said.

“All of his liver enzymes were off the charts, and our doctor referred us to Children’s Mercy Hospital in Kansas City, Mo.,” Kristi said.

Their doctor in El Dorado, Cathy Cooper, specializing in family medicine and obstetrics, told them Eli would be in good hands with James F. Daniel, specializing in pediatric gastroenterology in Kansas City.

“Eli was diagnosed (at five weeks of age) with a liver disorder he was born with that was making his little body sick,” she said. “And, that’s when our journey started.”

During the next few months, Eli would undergo testing by his “liver team,” to further identify his disorder.

A miracle

On one Saturday evening, Kristi was reading to their four children about Jesus and the miracle he performed in healing a blind man.

Kelley wasn’t there, she said, because in addition to being a family man and owning a business, he is also a volunteer firefighter and that night he responded to a structure fire.

After reading the story, Kristi asked the children what miracle they wish Jesus would give their family. She said they started wishing for a cat or dog, but then their son, Connor, excitedly said, “No, not cats or dogs—Eli’s liver.”

Once they decided that was their wish, Kristi said they said a prayer.

“Lord, you know our situation,” she said. “We want a miracle for our Eli, but he is in your hands, and we know in heaven he will be healed. Thy will be done.”

The next morning everybody got up for church, Kristi noticed El’s skin was pink and white skin, not yellow.

“I have never seen him with pink and white skin,” she said.

The journey continues

Even in the sickest moments Kristi said Eli tries to be happy.

“If somebody new comes into his (hospital) room, he smiles and wants to cheerful,” she said.

Kristi said she thinks Eli has been getting a little worse since January,

“He seems a bit lethargic, and after checking his labs about a month ago, they weren’t great, but were stable,” she said.

Although confident that Eli’s doctors and liver team are doing their best, Kristi thought it would be good to get a second opinion.

“We took him to Nebraska because we didn’t have a diagnosis (at the time),” she said.

The doctor there specialized in gastroenterology at the Children’s Hospital and Medical Center in Omaha.

“The doctor labeled Eli’s condition in the birth defect category,” Kristi said.

The doctor told them it wasn’t genetic, and in his opinion most chronic liver patients are on two medications.

With Eli taking 10 different medications, the doctor told Kristi and Kelley it’s a struggle Eli’s doctors are in to keep him going.

“Eli’s liver probably doesn’t have a lot of reserve left,” he told them. “Anything could affect his liver— from getting a viral illness, being in an accident, falling, or having a severe GI bleed —could throw him in acute liver failure.”

The family

Kristi said they are a faith-filled family who love Jesus and trust in an infinite God.

“We firmly believe that although life is not fair, and it has broken our hearts over and over again to helplessly watch our child suffer, there is grace enough,” she said.

In addition, Kristi said her family still chooses to find “joy,” and know that “life” is just a stepping stone to heaven.

Kelley and Kristi were married in 2007. Their firstborn is Connor, 8; Addison, the couple’s only daughter, is 6; Dominic, their third child, is 4 and Eli is 2.

Eli’s paternal grandparents are Ron and Margaret Jantz, also of Burns. Maternal grandparents are Jake and Rhonda Schmidt of Eureka, and Eva Reimer, 19, has been a part of their family since Eli was 4 months old.

“She is helping out with housework and babysitting when needed,” Kristi said. “Eva, and her family are from our local community.”

Eli has nicknamed Eva ‘Easy’ because he can’t say Miss Eva.”

Helping Eli

Encouraged by the deacons in their church, the Jantz family is trying to raise $50,000, but their need is much larger than that.

“Our church has definitely pitched in, but it’s one of those situations where the need is just so great that we were encouraged to start a GoFundMe page,” she said.

The address is gofundme.com/eliparkerjantz; the link will take the user to the campaign page for Eli.

Kelley said $5 will pay for the co-pay for one of Eli’s medicines.

One of Eli’s prescriptions was compounded by the pharmacy, and he had a bad reaction, Kristi said.

“Insurance won’t pay for the compounded medication,” she said. “The out-of-pocket cost is $230 for this one medication.”

Compounded medications are necessary for Eli because he can’t swallow pills, she said, which is why most of his medicines are in liquid form and cost $200-$500 a month.”

Kelley said they have been “handling it and handling it,” referring to all the financial issues associated with insurance, the doc­tors, the testing procedures, trips to and from Kansas City, prescription costs, insurance deductibles and more.

“We mortgaged our home,” Kelley said. “When Eli gets the transplant, we will live in Kansas City for three weeks to four months because we can’t be more than two hours from the medical center.”

With Eli having “Pediatric End Stage Liver Disease,” the family lives one day at a time and is learning patience.

“In 2016, Blue Cross Blue Shield of Kansas paid out almost $1 million, and most was for hospital stays,” Kristi said.

Prior to this year, the family received state aid, but no longer; Blue Cross Blue Shield is no longer offering the program they had.

“Over half of our family’s income is spent just on taking care of Eli,” Kristi said.

Kristi said they went with an insurance company, Medica, originated by Mayo Clinic in Rochester, Minn.

“We are thankful for each day he is blessed with health in spite of his failing liver,” Kristi said. “Asking people to help us raise money for the expenses surrounding Eli’s care is one of the most humbling and different things to ask. But,we have been advised, and strongly feel like now is the time ask for help.”

The family’s funds are depleted, she said.

“We know there aren’t grand enough words in the English vocabulary to say thank-you for such acts of kindness and unselfishness to our need,” she said.

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