Eli Jantz's Journey To A New Liver
Donation protected
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
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
Organizer
Kelvin Jantz
Organizer
Burns, KS
