Eli Jantz's Journey To A New Liver

$42,560 of $50,000 goal

Raised by 263 people in 25 months
Hi there! to all you dear people who are interested in our son, Eli Parker Jantz, age 2... First of all, a very short version of Eli's story to get you in the loop...if you want to read the longer version, it is the first 3 updates that are posted here  on his gofundme site and we would truly appreciate it if you took the time to do so...for then you will really know his JOURNEY, and maybe even feel like you know us a bit better...
Eli was diagnosed at 5 weeks of age with a liver disorder that was making his little body very sick. Eventually, after months of testing, his Liver Team gave his illness the official diagnosis of "Idiopathic Neonatal Hepatitis", which has rapidly progressed into "Pediatric End Stage Liver Disease". Eli has faced enormous challenges with his health in his little lifetime so far, and more than once we have prayed to our God for his life... Eli is on the liver transplant waiting list. He holds an inactive status due to the current stability of his liver, but a transplant is inevitable. We are thankful for each day he is blessed with "health" in spite of his failing liver. Eli is the sweetest and most charming of little personalities that you could ever meet! His soft voice drawling "thank-ooo, mommy" so many times a day, and "awwwll-wite" when I tell him it's time for meds, is forever lodged in my motherheart! He LOVES to sing...it doesn't matter where or what, he just loves all things music. He is also one of the 'gang', if his brother's and sissy can do it, than so can he!! He has a little fighter's spirit, which serves him well in his battle with chronic illness...
It is one of the most humbling and difficult things to ask people to help us raise money for the expenses surrounding Eli's care, but we have been advised and strongly feel like NOW is the time ask for help. The need is quite urgent, for if we cannot raise $2,000 by the end of the month, Eli is at risk for losing his health insurance coverage...our funds are just depleted. And now for a quick explanation of his expenses... Due to all the cuts our health care system has taken and the changes that 2017 brought, Eli has been denied coverage through the state last year and again, this year. We also have applied for disability to help pay for some of his medication, and they said there was no question of whether or not he was disabled, he was...but again, due to tightening reqirements to qualify, Eli was not accepted. Last year Eli was covered with an amazing plan through Blue Cross and Blue Shield of KS. They paid out nearly a $1,000,000 on his health care. Sadly, it was discontinued and they did not offer a family plan that included good coverage for a transplant candidate for 2017, and so we were forced to make a new choice for our health insurance. We prayed and researched and prayed some more and settled with an insurance through MEDICA (new to the state of KS this year). The cost of providing health care for Eli this year is projecting to total around $46,000. This includes insurance premiums and co-pays, medications and required nutritional supplements (a grand total of 14 different ones taken twice daily), and the childcare support that is needed due to all of Eli's appointments and extra care. It does NOT include his critical care transport that happened in April, which we know from past experience, is about $17,000.  It does not include past due medical bills, or any travel, fuel, vehicle (we have a Yukon that is faithful, but tired, and with all the extra wear and tear of MANY miles driven to doctor's appointments, is needing much more tender loving care), and time off work expenses needed for Eli's hospital stays and many clinic appointments. In lieu of the nearly 1 million that BCBS of KS paid last year, $46,000 seems managable...but in reality, it's not. I'll just be honest, it's well over half of our family's income. Just a "fun fact"...in case any of y'all are interested, the cost for the actual transplant itself is roughly $500,000 and they tell us that it can quickly escalate to $1,000,000 should there be any complications. Insurance should cover the brunt of that. We, of course, have no way of knowing when Eli will actually be getting his transplant, a second chance at life...But we have to try and be prepared for living in Kansas City for at least 6 weeks-3 months following transplant, and all the extra living expense that it will bring. We have set our goal at $50,000 to help cover Eli's basic needs for this year, but as you can see, the financial needs of our family are gi-enormous.  Another factor that I should mention to be fair to our whole situation is, as follows...we are entrepeneurs and, together with Kelley's folks, work for our family owned construction company that has made our living ever since we've been married. Within the last 2 years, Jantz Carpentry has endured some very serious losses, but we made the decision to fight for our almost 40 year old company. Kelley, his dad, Ron, and mom, Margaret, have worked SO hard over this time frame, and with their hearts, minds, and bodies put a superhuman effort into doing what they love, providing for our unique family needs, and trying desparately to save our business. But the extra expenses due to Eli's chronic illness, are now taking the last vital life and breath needed for our company to survive. I am NOT asking for any extra pity or sympathy for that situation...but it's only fair to give my family the credit that they deserve for providing the impossible.
If you donate $5.00, know that amount pays the co-pay for 1 medication for 1 month...and we are grateful...If you donate $30.00, know that you paid the co-pay for 1 clinic visit...and we are grateful...if you donate $50.00, know that you provided fuel for half of the roundtrip to Eli's clinic appointment in Kansas City...and we are grateful...If you donate $100.00, know that you were 1 of 15 people that paid his insurance premium for 1 month...and we are grateful...If you can donate $200.00, know that you bought 1 of Eli's meds that insurance doesn't cover for 1 month...and we are grateful...If you can donate ANY amount know that YOU helped pay for a chronically ill child's quality of life for 1 year...and we are forever grateful! If you remember our Eli and his family in your thoughts and prayers...we are also very grateful, for that alone is powerful... God Bless each one of you who reads this plea for help and in that way has touched our lives and shared our burden... We LOVE you! There have all ready been many kind and generous friends and family who have donated money towards Eli's expenses and we are so very thankful!! That is how we have made it this far. We will do our best to post updates on Eli here on gofundme as well as on his Caring Bridge site, which is at caringbridge.org and his site name is eliparkerjantz. We know there are not grand enough words in the English vocabulary to say "THANK-YOU" for such acts of kindness and unselfishness to our need...
"The Lord bless thee and keep thee: The Lord make his face to shine upon thee, and be gracious unto thee: the Lord lift up his coutenance upon thee, and give thee peace." Numbers 6:24-26
In HIS love and grace,
Kelley and Kristi Jantz
Connor, Addison, Dominic,
And, of course, Eli Parker
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This was started by Kelley’s really close friend on the fire department Alan Black he donated the pig and his farther Barry Black is donating the processing so we thought we would post it on here if anyone is interested in a chance at some good pork in your freezer and also in help Eli. Here is Alan’s post and if interested contact numbers on bottom of poster picture drawing is wens-day evening
So we are doing a fundraiser for one our own firefighters and his family. Eli is their son and has fought a tough battle for being 3 y/o. All proceeds will go to assist the family with the long road ahead with medical bills. There are 2 halves so 2 chances with each ticket. If anybody is interested contacts are on the bottom or talk to any of our firefighters. So we are doing a fundraiser for one our own firefighters and his family. Eli is their son and has fought a tough battle for being 3 y/o. All proceeds will go to assist the family with the long road ahead with medical bills. There are 2 halves so 2 chances with each ticket. If anybody is interested contacts are on the bottom or talk to any of our firefighters. Alan Black 6207554149
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Hey there!
It's way past time to connect with you all and give you a peek into the "life of Eli" again!=) The last bit has been a tad rough for him as far as his daily health is concerned...He hasn't been feeling as well as he was several months ago as a general rule, and Momma J has been a little worried about him...guess he's just had some "bum liver days"...He had some lumps that became pretty noticeable on his neck as of the last couple weeks and we were pretty sure they were just normal lymph nodes, but this Momma's "goosey" =) and we took him in to have Dr. Cooper confirm that it was all OK. I guess he's skinny enough they just are becoming quite visible, especially when he turns his head a certain way... This past week he was suddenly very ill. He had an unexplained acute fever for about 48-ish hours and had us anxious about an infection somewhere. His team up at Children's Mercy ordered some lab work and his inflammatory markers (CRP) were significantly elevated, but his liver labs were holding stable from June '17. We took him in to see a doctor and it was suspected he may have an ear infection, but Momma was pretty sure he didn't...took him back in a day later and got it confirmed that he did NOT have an ear infection...So, most likely, he had a viral infection of some sort, or he had a flare up of a bacterial infection?? Due to the stress of his little body being sick, his abdomen was hanging on to a bunch of extra fluid again, but that is slowly getting better too... So thankful that Eli has been able to stay out of the hospital this summer in spite of being sick a few times.
The rest of us are doing just pretty well...Daddy is quite busy with work and Connor is going to be starting school...2nd grade...this coming Wednesday!! Addi is so excited to be getting ready for school also, as she will be starting Kindergarten in a few months...Momma J is occupied with office work and taking care of her tribe...
Where did the summer go??? It passed in a blur of swimming pools and goggles, of four-wheeler rides and sand pile times, of good 'ole fishing days and a few crackling camp fires, the kind of work that is sometimes referred to as "old-fashioned", when the sweat rolls and hands are calloused.....in a whoosh! the smell of sun screen and flowers, the mellowness of farmland and cattle, of hot pavement and BBQ floated through our senses.....sounds of baby kittens mewing, our faithful collie dog barking, and the ever present happy music that children make, the laughter of friends and chats with family creating even closer ties that bond us together for a lifetime and beyond.....And an undercurrent that runs through it all of a humble feeling at the goodness of our Maker, a learning to find acceptance always and be thankful for our trials...for they only serve to make us stronger, of an awareness that we must live in today and cherish each moment, as they are fleeting and we are not promised tomorrow...that is where our happy summer went...and it is gone, only to be replaced with another season of life...beautiful fall and busy schooltimes!!!
Once again we say "THANK-YOU" from the depths of our hearts...the efforts of many are making our load easier to carry, and truly the money we have received has seemed as a miracle to us...it has been paying past due medical bills, got his insurance premiums paid up to date, bought his meds, and a few other medical related expenses caught up also... We appreciate every single one of you who are "joining Eli's journey" with us as he battles chronic liver disease and lives life to the fullest!!! And again...may God truly bless your hearts for your generosity...
In His Love and Grace,
Kelley and Kristi, Connor, Addi, Dom, and Eli
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Hello! to of our wonderful support group!
We want to thank every one of you who has so generously donated to the need of our Eli and his family so far!! We are overwhelmed by the support and are very grateful! Please continue to share his story!!
Thought I would post just a little introduction to the people who live with and take care of Eli to those of you who may not know us that well... We are a faith-filled family who trusts in an infinite GOD and who loves JESUS...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 and we still choose to find JOY and know that LIFE is just a stepping stone to HEAVEN. " For we walk by faith, not by sight." 2 Corinthians 5:7
Kelley, a business owner, volunteer firefighter, and family man, is DADDY. And I, Kristi, well....mainly I'm just "MOMMA", a homemaker who loves Annie Sloan chalk paint, and also does secretary work for our business. We were married in 2007 and have 4 beautiful children. Connor, our firstborn, is 8 years old and is a carbon copy of his daddy...smart, completely lovable and tenderhearted. Addison, our only daughter, is 6 years old and with her pretty blond hair and baby blue eyes looks nothing like her mother...she is an animal lover, tomboy, and girly-girl all rolled into one!! Dominic, our 3rd child, is 4 years old...a "Mr. Fix-it" he loves all things fast and furious and cannot wait to own a dirt bike!! our family just wouldn't be 'OK' without our Dom! And then Eli, age 2, came along in April of 2015, to make our little family complete...He is showing us that miracles still happen and that even though life is tough it is still GOOD! His big brown eyes add a sparkle to our home that nothing can replace..."Every good and perfect gift is from above" James 1:17 Gentry is our 2 year old Sheltie Collie and he is VERY much a member of the family!! Eli's Paternal Papa's are Ron and Margaret Jantz, Burns, KS and his Maternal Papa's are Jake and Rhonda Schmidt, Eureka, KS. And they are very BELOVED!! Miss Eva Reimer, age 19, has been a part of our family since Eli was 4 months old, helping out with housework and babysitting when needed. She and her family are from our local community and we love her dearly. Eli has nick-named her "Easy" because he cannot say Miss Eva! Once again, with tears in our eyes, we say THANK-YOU and may our God richly bless your generosity and caring hearts...you will never know how much the lift to this very heavy financial burden means to us...
today, we were that "someone"...thankyou
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Eli's Story...Part 3...2017 to date...
New Year's Eve found us at the ER yet again. Eli was spiking a pretty significant fever and he was diagnosed with double ear infection, like the 6th ear infection within the last year. He had a routine clinic visit on January 9th and it was decided that he needed to see a pediatric ENT specialist. His labs checked out great except for a spike in his GGT levels(an enzyme that signals damage), which Dr. Daniel said he would be keeping a close eye on. Towards the end of January Eli was seen by Dr. Carrie Francis, and his ears, nose, and throat checked out fine. He did meet all the criteria for ear tubes, but Dr. Francis discouraged it due to all the times he has been put under anesthesia, she didn't think it was worth the risk of doing it. We agreed, and Dr. Daniel supported it also. Eli also had an ultrasound with Dopplar done to check on his liver, spleen, and ascites. We stopped by the Liver Care Center afterwards to discuss the results with Dr. Daniel and he also had something else he wanted to run by us. He thought that we could make Eli inactive on the transplant waiting list for right now. He is doing pretty good and his PELD score is hardly high enough to get an offer anyway. He can be reactivated at any moment should he experience a sudden decline. Dr. Daniel told us that last year at this time his liver team didn't think that he would live another year without a liver transplant, but that Eli had proved them wrong! We left with a feeling of calm and quiet joy. The last year had been a hard fought battle, a literal roller coaster ride...with us hanging on tight to the Hand of the Man...and this moment felt good. A couple of weeks later Eli had another bout of GI bleeding, but it soon resolved. His doctor's had finally come to the conclusion that his ongoing GI bleeding was mostly due to a unique condition in which the lining of the small and large intestines bruise and bleed easily, and that it should resolve on it's own within a year. And it has...finally. He also had a very scary reaction to one of his drugs that got compounded a different way due to new insurance restrictions, and so we are now paying out of pocket for that med, compounded the original way. March 27th he had another routine clinic visit and lab check. This time all of Eli's liver enzymes had followed suit with his GGT levels and taken a jump. His WBC has continued to trend down and stay there, also his RBC, platelets, hemoglobin...so? was January the beginning of a slow decline in liver function? We don't know. With liver disease it's truly living one day at a time and learning lots about being patient. There is just no way of knowing how long Eli's liver will hang in there. April 9th, 2017, Eli's second birthday, he woke up with a fever. We have joked that his birthday must be jinxed! LOL He continued to worsen, and so I took him to the ER a couple days later. I felt rather silly on the drive in 'cause Eli was singing away in his car seat, and I thought that any toddler that still felt good enough to sing wasn't that sick...but I was wrong. While at the ER waiting on labs Eli's condition deteriorated rapidly. His fever spiked to 104.7 and he started moaning and crying in pain. His lab work did not look good and once again he was taken by the brave little fixed wing in care of CMH's wonderful Critical Care Transport Team. He was one very sick little boy. He continued to spike fevers for a solid 7 days, his liver began showing signs of stress and he became jaundiced. Eli tested positive for 2 different viral infections. He got to come home on the 17th. Eli slowly recovered and on June 6th his labs showed his blood counts had stabilized and his bili levels had come back down. His liver enzymes however have stayed elevated and his splenomegaly has gotten worse. You can feel the edge of his liver about 4cm below his ribcage and it feels like a piece of bone. He is taking the limit that he can of diuretics to manage his ascites and he has developed a low grade heart murmur, which is most likely a result of his portal hypertension. This brings us up to date...Eli is having a fun summer soaking up the sunshine which=Vitamin D. He loves to be my little helper! Right now he has been battling his second viral cold in 4 weeks so has been feeling kinda tough, but still smiling. I sincerely hope his story does not come across as negative in any way because even tho' we would much rather Eli had a healthy liver, we would not trade him or the experience of the last 2 years for anything. It is in the darkest moments of our lives that we have been shown the closeness of Heaven and God and the great caring that still dwells in human hearts. Eli 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 the entire of his life being sick, but still being strong and happy. If you have taken the time to read all 3 parts of Eli's story, thank-you from the bottom of our hearts! "The struggle of life is one of our greatest blessings. It makes us patient, sensitive, and God-like. It teaches us that although the world is full of suffering it is also full of the overcoming of it." Helen Keller
Note: a special thanks! to our cousin Marissa for providing some of the photos we shared on this site.
He's got the whole world in HIS HANDS...
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$42,560 of $50,000 goal

Raised by 263 people in 25 months
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