Jason's Fight for Life!
Donation protected
Jason is our whole world!! He is a supportive, amazing husband, a wonderful, caring and proud father, a loving son and son-in-law, a brother and brother-in-law, an uncle, and a good friend to everyone he meets!
Jason's lifelong battle started when he was just 3 weeks old! He had spinal meningitis that was wrongly diagnosed as the flu. By the time they figured it out, one kidney was completely destroyed and he was left with only about 70% function of the other one. He battled illness upon illness growing up, as he continues to do today, with courage and gusto!
When Jason went in at age 12 for his sports physical, they found he had high blood pressure and he was down to about 30% function of his kidney. Once on the transplant lists, he had a match within a few weeks. He received the kidney from a female cadaver, which in turn gave him a very rare antibody. It rejected when he was 19. At that time, was put on Hemodialysis. Since then, he has had several grafts in and out through his entire body. We also tried Peritoneal Dialysis, for about 2 and a half years. Jason continuously wound up with terrible infections and they had to remove the access. His doctor felt his peritoneal cavity simply couldn't support the dialysis.
He has been back on Hemodialysis since September, 2012. They are running out of places in which they can put a graft, in order for Jason to continue to receive his dialysis to stay alive. He has poor circulation throughout his body due to what is considered a Micro-Vascular disease, which is now affecting his chances of getting another transplant. Because of this horrible disease, in November of 2012, Jason became a Left, Below the Knee Amputee (LBKA). He fought hard to to meet all his goals and with the help of his brave little girl leading him all the way, he did so ahead of schedule! Jason has also lost his birdie, and will continue to lose other fingers, hands and possibly his other foot.
Currently, Jason is using his prosthetic leg, which now thank you to MediCare is only partially covered. We are responsible for 20 percent. He also has a walker and a wheelchair to help him when he is too weak or unable to use his prosthetic, or when we go for longer walks than just around the block or to somewhere that he will be unable to sit every few feet and rest. It is also for these reasons, we need help getting some things done around our home to make them more safe for Jason. If we wait until we absolutely need them, it may be too late.
He currently dialyzes through a dialysis catheter in his chest. They were attempting to reconstruct his vascular region on his left side, but it has not been easy. We recently almost lost Jason as he had a clot in his neck that showed up after they pulled his Picc Line that had clotted off in February. When Dr. Eclavea went in to try to open things up in March, the day was "miraculous" as he had to do things he didn't even know he could do to open up Jason's Superior Vena Cava, where blood flows into your heart. We all need that open for blood to flow, but Jason also needed it open in order to get the dialysis catheter back in. The dialysis catheter is his lifeline!
Those last few months taught us that we needed to get things built around here and we need to start living our life with our daughter to enjoy our lives to the fullest! We can't predict the future and don't know whether we will have 3-5 years with Jason, 3-5 months or 3-5 days. No matter, we need to start living! We have a very spunky, funny, brave and adorable eight year old who wants her Daddy to be around for a long time to watch her grow up and with whom to experience life! Likewise, he wants to be here for many years to come! We know he doesn't have a lifetime, but we want the years we have in our home to be memorable ones!
Your money would be used to completely support Jason and to make his life easier and more accessible! With 19 years on dialysis, Jason is starting to feel the effects. He is getting much weaker and is much more tired after treatment. He is losing his memory and concentration, also common side effects after being on dialysis for so long. He wants to do things with us and with his daughter while he is still alert and able to do so, even if he has to fight through the pain and weakness to get out! His most important goal is not to leave us with any of his medical bills, a never-ending amount!
We have had so many people ask how they can help and could we please start a page like this. If you would like to donate, please do whether it is on this page or through a donation to Jason. Otherwise, feel free to help with manpower, supplies, time, etc! With his health, it's is hard for us to make solid plans, but we welcome company, prayers, cards, and loved ones to lift our spirits! It means so much that you are just taking the time to read our story! Please know you are always welcome to ask questions also as we are never afraid to share! You can keep up with our journey on Jason's Caring Bridge Site as well. Jason is truly a remarkable man and because of him, our daughter is growing up to be just like her Daddy! He is our very own Superhero!
Any assistance you can offer would support us in:
* Putting in our new concrete driveway and patio, which is a cracked mess. Jason has fallen more times than we can count since we posted this site. He is more steady on his new prosthetic; however, due to the uneven ground, the slippery ramp in bad weather, and the pain in his legs and his increased fatigue, he very easily loses his footing.
* We would use the money to put in a stand-up shower, and/or a walk-in bathtub, which would be best for him. We would also use some of the money to revamp the bathroom to make it easier for him to maneuver in and around the bathroom.
* Invest in a large, service dog for Jason to give him stability to lean against when he feels he is losing balance, to give him extra personal space, to remind him to sit when needed and help him with personal tasks around the house and throughout our community.
* Set up a college fund for Ella as our family money has all gone to paying medical bills.
* Any money leftover from this fund would also be used to establish a funeral/memorial fund for Jason as he is not eligible for Life Insurance of any kind due to his condition.
* Help us pay off medical bills! ~~ A large portion of our money has gone to pay medical bills. Thankfully Jason was able to get his new, permanent leg! He also needed to order two new sleeves so he had a spare and one to "trade off" and that was well over $350! Insurance only covers one every 3 years.
* Add a fence to allow Jason to take care of the dogs when he is home alone. With his fingers, it is hard to put them on, and take them off, their leashes. ~~ Jason's buds growing up were able to come and get the fence half put in! Until the driveway is complete, we are unable to attach it to the house. Once we get the driveway done, we will be able to finish it; however, what is done, is beautiful and the dogs love it! They just can't be in there alone yet!
*We would build raised garden beds for us to be able to garden as a family. Jason is unable to get up and down off the ground very well, so we would like something that is higher up that he can reach from a chair, and eventually, from his walker and/or wheelchair.~~These were built and paid for by his high school friend and his dad, Dan and Dave Paul! BIG thanks! They are full and we have been weeding like crazy, which has been very therapeutic for us all!) We have been enjoying tomatoes and green beans like crazy! I have now figured out how to best configure the garden as our radishes didn't work out so well and our cauliflower had been overtaken by our gigantic tomatoe plants!
* Purchase a scooter that we can put in the van or on the back for Jason to use when we go for long walks, to the zoo, to follow Ella on her scooter, when we go on a bike rides, etc. This will also be helpful as Jason's health deteriorates! ~~ We have received two beautiful scooters from the Jovle family and from an amazing group out of Chicago called the Humboldt Park Jeeps! We also have to thank my parents and Accurate Alignment for finding a better trailer with a ramp that Jason can now drive the scooter up onto and it fits the scooters better.
We will prioritize the funds as we receieve them, along with my parents and his sister who are helping us with this project, but we need the cement and bathroom done asap! We will continue posting updates along the way!
Jason's lifelong battle started when he was just 3 weeks old! He had spinal meningitis that was wrongly diagnosed as the flu. By the time they figured it out, one kidney was completely destroyed and he was left with only about 70% function of the other one. He battled illness upon illness growing up, as he continues to do today, with courage and gusto!
When Jason went in at age 12 for his sports physical, they found he had high blood pressure and he was down to about 30% function of his kidney. Once on the transplant lists, he had a match within a few weeks. He received the kidney from a female cadaver, which in turn gave him a very rare antibody. It rejected when he was 19. At that time, was put on Hemodialysis. Since then, he has had several grafts in and out through his entire body. We also tried Peritoneal Dialysis, for about 2 and a half years. Jason continuously wound up with terrible infections and they had to remove the access. His doctor felt his peritoneal cavity simply couldn't support the dialysis.
He has been back on Hemodialysis since September, 2012. They are running out of places in which they can put a graft, in order for Jason to continue to receive his dialysis to stay alive. He has poor circulation throughout his body due to what is considered a Micro-Vascular disease, which is now affecting his chances of getting another transplant. Because of this horrible disease, in November of 2012, Jason became a Left, Below the Knee Amputee (LBKA). He fought hard to to meet all his goals and with the help of his brave little girl leading him all the way, he did so ahead of schedule! Jason has also lost his birdie, and will continue to lose other fingers, hands and possibly his other foot.
Currently, Jason is using his prosthetic leg, which now thank you to MediCare is only partially covered. We are responsible for 20 percent. He also has a walker and a wheelchair to help him when he is too weak or unable to use his prosthetic, or when we go for longer walks than just around the block or to somewhere that he will be unable to sit every few feet and rest. It is also for these reasons, we need help getting some things done around our home to make them more safe for Jason. If we wait until we absolutely need them, it may be too late.
He currently dialyzes through a dialysis catheter in his chest. They were attempting to reconstruct his vascular region on his left side, but it has not been easy. We recently almost lost Jason as he had a clot in his neck that showed up after they pulled his Picc Line that had clotted off in February. When Dr. Eclavea went in to try to open things up in March, the day was "miraculous" as he had to do things he didn't even know he could do to open up Jason's Superior Vena Cava, where blood flows into your heart. We all need that open for blood to flow, but Jason also needed it open in order to get the dialysis catheter back in. The dialysis catheter is his lifeline!
Those last few months taught us that we needed to get things built around here and we need to start living our life with our daughter to enjoy our lives to the fullest! We can't predict the future and don't know whether we will have 3-5 years with Jason, 3-5 months or 3-5 days. No matter, we need to start living! We have a very spunky, funny, brave and adorable eight year old who wants her Daddy to be around for a long time to watch her grow up and with whom to experience life! Likewise, he wants to be here for many years to come! We know he doesn't have a lifetime, but we want the years we have in our home to be memorable ones!
Your money would be used to completely support Jason and to make his life easier and more accessible! With 19 years on dialysis, Jason is starting to feel the effects. He is getting much weaker and is much more tired after treatment. He is losing his memory and concentration, also common side effects after being on dialysis for so long. He wants to do things with us and with his daughter while he is still alert and able to do so, even if he has to fight through the pain and weakness to get out! His most important goal is not to leave us with any of his medical bills, a never-ending amount!
We have had so many people ask how they can help and could we please start a page like this. If you would like to donate, please do whether it is on this page or through a donation to Jason. Otherwise, feel free to help with manpower, supplies, time, etc! With his health, it's is hard for us to make solid plans, but we welcome company, prayers, cards, and loved ones to lift our spirits! It means so much that you are just taking the time to read our story! Please know you are always welcome to ask questions also as we are never afraid to share! You can keep up with our journey on Jason's Caring Bridge Site as well. Jason is truly a remarkable man and because of him, our daughter is growing up to be just like her Daddy! He is our very own Superhero!
Any assistance you can offer would support us in:
* Putting in our new concrete driveway and patio, which is a cracked mess. Jason has fallen more times than we can count since we posted this site. He is more steady on his new prosthetic; however, due to the uneven ground, the slippery ramp in bad weather, and the pain in his legs and his increased fatigue, he very easily loses his footing.
* We would use the money to put in a stand-up shower, and/or a walk-in bathtub, which would be best for him. We would also use some of the money to revamp the bathroom to make it easier for him to maneuver in and around the bathroom.
* Invest in a large, service dog for Jason to give him stability to lean against when he feels he is losing balance, to give him extra personal space, to remind him to sit when needed and help him with personal tasks around the house and throughout our community.
* Set up a college fund for Ella as our family money has all gone to paying medical bills.
* Any money leftover from this fund would also be used to establish a funeral/memorial fund for Jason as he is not eligible for Life Insurance of any kind due to his condition.
* Help us pay off medical bills! ~~ A large portion of our money has gone to pay medical bills. Thankfully Jason was able to get his new, permanent leg! He also needed to order two new sleeves so he had a spare and one to "trade off" and that was well over $350! Insurance only covers one every 3 years.
* Add a fence to allow Jason to take care of the dogs when he is home alone. With his fingers, it is hard to put them on, and take them off, their leashes. ~~ Jason's buds growing up were able to come and get the fence half put in! Until the driveway is complete, we are unable to attach it to the house. Once we get the driveway done, we will be able to finish it; however, what is done, is beautiful and the dogs love it! They just can't be in there alone yet!
*We would build raised garden beds for us to be able to garden as a family. Jason is unable to get up and down off the ground very well, so we would like something that is higher up that he can reach from a chair, and eventually, from his walker and/or wheelchair.~~These were built and paid for by his high school friend and his dad, Dan and Dave Paul! BIG thanks! They are full and we have been weeding like crazy, which has been very therapeutic for us all!) We have been enjoying tomatoes and green beans like crazy! I have now figured out how to best configure the garden as our radishes didn't work out so well and our cauliflower had been overtaken by our gigantic tomatoe plants!
* Purchase a scooter that we can put in the van or on the back for Jason to use when we go for long walks, to the zoo, to follow Ella on her scooter, when we go on a bike rides, etc. This will also be helpful as Jason's health deteriorates! ~~ We have received two beautiful scooters from the Jovle family and from an amazing group out of Chicago called the Humboldt Park Jeeps! We also have to thank my parents and Accurate Alignment for finding a better trailer with a ramp that Jason can now drive the scooter up onto and it fits the scooters better.
We will prioritize the funds as we receieve them, along with my parents and his sister who are helping us with this project, but we need the cement and bathroom done asap! We will continue posting updates along the way!
Organizer
Heidi Bergman Zick
Organizer
Appleton, WI