Maddy is a 26 year old in need of a second kidney transplant due to the extremely rare Dense Deposit Disease. We are raising funds for the travel expenses, new-to-market medications, and her required move to Iowa so that her transplant doctors may keep a close eye on her high risk case. The funds will go towards food, gas, hotel stays, medications, co-pays, and any uncovered testing. After transplant she will need multiple immunosuppressive and antibiotic medications that aren't fully covered by insurance. Maddy is hoping to find a living donor so that the kidney takes more easily to help her failing heart. We are raising funds to help pay for the living donor's food, travel, and expenses related to donation as well. THANK YOU for your consideration, donations, and well thoughts!!! Every positive thought, donation, and prayer is greatly appreciated! Let's help Maddy to live more normally after a lifelong battle with CKD and heart failure.
You may also donate via
Venmo - @TransplantForMaddy or
Paypal - @TransplantForMaddy26 THANK YOU!!!!!
Fundraiser and auction Spaghetti Dinner on Maddy and Kim Navarre's Facebook page May 30th :)
More of Maddy's Story:
Hey everyone!
As many of you know, I’m a 26 year old Michigander that has been battling kidney disease and heart failure for my entire life and on dialysis for the past 5 years. After years of mystery illness in childhood, I was finally diagnosed at age 11 with Dense Deposit Disease, an extremely rare subset of complement 3 glomerulonephritis. This aggressive autoimmune and kidney disease makes me a less than 1 in a million statistic I never wanted to be. It has stolen much of my life from me, and I’m ready to take it back!
As a child I participated in several experimental treatments such as IVIG infusions, chemotherapies, steroids and immunosuppressives, all of which did not work for my disease and instead wreaked havoc on my body. I missed much of my middle school, high school years and 20s to hospital stays, chemotherapy, dialysis and illness. At 16 years old I was put on dialysis and at 18 I received my first kidney transplant Groundhog’s Day of 2018 which was just in time as dialysis was barely working to keep me alive. This transplant narrowly saved my life, but unfortunately today I AM IN NEED OF A KIDNEY. I am forever grateful to my donor for SAVING MY LIFE and giving me 2.5 years free of living off of a machine. Those few years were the absolute best of my life! I was able to return to riding (with adjustments), travel, and LIVE instead of just trying to survive. RIP to my first donor HERO who saved my life- he is never forgotten! ❤️
Dishearteningly, my disease returned to no fault of my own due to lack of available treatment. We did all we could to save Punxsutawney Phil (my donated kidney), but my disease prevailed and I was back on dialysis in 2021 with no treatment options. Today, the horizon is much brighter with new promising medication options!
For background, I’ve spent the last 5 years asking for a transplant center to re-list me. I’ve spent thousands of dollars, put in countless phone calls, zoom meetings, doctors visits, had several tests conducted, cried many tears and, quite frankly, begged just to be denied transplant at every center due to disease return and my ejection fraction of only 15-20%. Most centers want 40%+ heart function (ejection fraction) in order to survive allograft placement, which I simply couldn’t achieve. *Receiving a kidney would preserve what’s left of my deteriorated heart function, so finding a donor as quickly as possible is ideal.* I appealed the decision at multiple centers and tried to list for dual organ (kidney and heart) transplant instead, just to be denied once again due to the rarity and complexity of DDD alone.
I was denied officially 14 times by Mayo Jackson, Mayo Rochester, Mayo Phoenix, Cleveland Clinic x2, Henry Ford x2, University of Michigan x3, Detroit Medical Center, Stanford University, Cedars-Sinai and Chicago Medicine with many other centers not getting me past the first phone call after learning I had DDD and severe heart failure. Each denial was a gut punch to my self worth- why don’t they think I’m worth it? I was being told by my doctors I’m an exemplary, well-educated patient, but simultaneously being told I’m not worth the effort. I continued to help with research when I could, be a patient educator to other dialysis and transplant patients, and dispel organ donation myths in hopes that one day things would change for me, too.
All hope was lost after being denied for transplant and watching myself deteriorate on dialysis over the years. I had countless hospital stays, poor dialysis, seizures, a coma, a cardiac arrest and many other complications. I was put in palliative care when I was 21 until May of 2025 when my doctors and I finally decided it might be time to stop dialysis and switch to hospice (end of life care). I was extremely frail, I couldn’t walk or care for myself, on oxygen, unable to eat, incoherent, 79lbs and had blood pressures of 45/30s down from my typical 220/130s. My heart was giving out, and dialysis was like running a marathon that it couldn’t handle anymore. I was taken off of my medication and switched to comfort care. My primary doctor looked at me with pity after trying everything, and I knew it was time. I started making my end of life plans with my mom.In August of 2025 I was in the hospital after having a seizure while on the dialysis machine. It was here that I found out that Empaveli, a new complement 3 inhibitor, was finally FDA approved! Growing up, I was a part of the DDD/C3GN studies that took place to research these complement inhibitors. Nephrologists and immunologists learned a lot from my case study, often citing me in research papers. I went in for extra blood work to help advance medicine for the next child diagnosed with DDD, even after I was beyond help. I am proud to say that all of my suffering was not for naught. I cried when I read of Empaveli’s approval, as we are such a tiny group of patients that an approval like this wasn't projected for another 10+ years. With this new drug, I was able to return to the transplant centers that denied me and ask again to be listed now that there is successful treatment for DDD. I was denied once again.
Thankfully, I decided to try University of Iowa, where all of my rare genetic testing had been conducted. The University of Iowa has been the hub for complement disorders, with a tiny, tight knit group of researchers that I had the pleasure of having dinner with at a medical conference. Luckily, these doctors were impressed with my drive and fast tracked me to their transplant team, advocating for my listing themselves! The University of Iowa has experience with the use of Empaveli, and was comfortable taking my difficult case. After months of travel, a heart catheterization, stress test, tons of doctors visits, education sessions, blood work and several heartfelt discussions, I was finally LISTED FOR KIDNEY TRANSPLANT at University of Iowa! This was a miracle victory for me after years of heartbreak.
Of course, my heart function was still an issue at only 15-20%. I went through months of testing to rule out needing a heart transplant as well. Every other center insisted on dual organ transplant, but didn’t put the time into my case to investigate my cardiac function further. In the end, Iowa decided I am borderline to be listed for a heart transplant, but I am young and with the history of my ejection fraction returning to normal after my first kidney transplant, it should recover with a new kidney. I am thankful they put in the time and effort, and listened to me as a patient. I push myself hard daily to maintain what heart function I do have, and it paid off on my stress test. We expect my heart to recover some function after I get a new kidney, and the sooner the better!
Unfortunately, I have very high antibodies from my first kidney transplant and a rare blood type of O-. My antibodies are at 75%, which means 75% of the kidneys that become available will not match me. This means I have an extra long wait time, an average of 5-7 years waiting on the list. Finding a living donor would cut my wait time and save my life. This is where I need your help!
Living donation offers much better kidney transplant outcomes in comparison to deceased donation by often functioning immediately instead of needing “wake-up” time, and better long term transplant outcomes. This also allows me to know more of the donor’s medical history, making it the safer option. Over 100,000 people are waiting for transplant, and every 2 hours someone dies.
Living kidney donation is an easy and safe procedure. You only need one kidney to live with a fully functioning renal system, and with today’s technology, the donor surgery is done with a small laparoscopic incision. This means there are only a few small incisions for the instruments and camera and a single larger incision for the kidney removal. The transplant team will complete an extensive evaluation like they did on me to make sure it is absolutely safe for you as the donor. Donors are often out of the hospital within 1-3 days and most of your testing can all be done at a facility close to home! Only the surgery will take place in Iowa. I will be a difficult match, so the more people who submit applications the better chance I have to find a match!
Please do not assume you aren’t healthy enough to donate, you’d be surprised at who is able to! Yes, even older adults with certain medical conditions can donate. My kidney function is 0%, so any kidney would be an improvement and blessing! You DO NOT need to be my blood type to do paired donation in lieu of me! Anyone wanting to potentially donate can simply fill out an application and let the transplant team evaluate. You can scan the QR code or click this link: https://uiowa.donorscreen.org. The transplant team has your best interests in mind, and will only move forward with testing if you’re going to be completely healthy before, during and after donation. They will follow you for 2 years after donation to be sure you’re healthy. Donors usually return to work after a few weeks, and you can change your mind at any point in the process.
What many people don’t know is that you DO NOT need to be my blood type to donate in lieu of me! If you are not a match, you may be a match for someone else waiting in what’s called chained or paired donation. This means we could match your kidney to someone else waiting, and their donor may match me for a swap. This would cut my time waiting as well, and can be swapped out up to 8 times for a great match! Not to mention, you’d get to travel for free and get time off of work.
I would love to be able to have a job, ride my horse, go to school, and be a normal 20 something. My life now is surviving day to day on a machine 12-16+ hours a week, strict dieting, constantly trying to catch up on rest, dealing with intense symptoms, and wishing I could drink water freely. After 5 years in the anuria club, I’d like out. It’s not the kind of club you want to be in!
Asking family and friends for donations and a living donor is not easy. I come to you humbly to ask for a favor that would turn my life around. I’d be forever grateful for someone to step up to SAVE MY LIFE with a selfless act I could never fully repay. You have the power to give the greatest gift you could ever give, the GIFT OF LIFE! ❤️ Thank you kindly for your consideration!
Please, help me get off of life support and consider being my superhero?
Thank you so much for reading and for everyone who has given me words of encouragement, donated, or considered becoming my donor!
-Madison Navarre, a 26 yr old 5-year dialysis patient
Please apply to be my donor at:
https://uiowa.donorscreen.org and mention Madison Navarre or
contact (319) [phone redacted] and ask for Brittany Hohoff with any additional questions.
LIKES AND SHARES ARE GREATLY APPRECIATED!
MORE EXPOSURE = MORE CHANCES TO FIND A DONOR! THANK YOU FROM THE BOTTOM OF MY HEART!! ❤️