Maddy was born 5 weeks early. Her mother was a high risk pregnancy because she was diabetic. We were told she may have issues when she was born and soon after it was confirmed. Maddy has her first bad UTI before her first birthday and had several back to back which raised concern. She was later diagnosed with caudal regression syndrome, neurogenic bladder, kidney reflux, and kidney disease. We did our best to try and manage the disease through daily medicine, diet, and multiple surgeries on her bladder and ureters. As Maddy got older her kidneys slowly failed, although you really wouldn’t know. Maddy’s kidney disease caused her to get very tired after short spurs of activity at times. When she felt good she was very active. Maddy loves swimming, kayaking, nature, and her two dogs Mickey and Tucker.
During a visit to the nephrologist in October of 2018 we were told Maddy would need a new transplant. Even though we knew this day would come the news devastated me, but I told Maddy everything would be ok and we would do whatever we needed to get her better. When you are told you could only has 18% function left you expect things to start happening right away, it did not. The one thing I took away from the process of getting a transplant was how long a process it is. It kept me somewhat sane. I thought that if it was serious we wouldn’t be waiting months between appointments.
Maddy was finally added to the transplant registry in April of 2019 after completing the initial evaluation. That is when we went to work. We created a social media profile to get the word out. We had family and friends get tested but weren’t getting anywhere. Most were medically disqualified or not a match. On June 24th I started sharing the Kidney 4 Maddy page on Facebook groups in our area. These groups had thousands of members so I thought it would be a good resource. Prior to that I looked in to renting a billboard and putting a sticker on the back window of my car. Thank you to both the companies I worked with that were going to heavily discount or provide their services for free. It was in my friends For Sale Exchange group that someone shared my post on their timeline where our donor saw Maddy’s story and was moved to get tested.
A lot of people reached out over the coming days telling me they were getting test kits. We made several new friends and our faith in humanity has been restored. People from all walks of life got tested to save my daughter’s life. Some time passes and life went on. Maddy was granted a wish by Make A Wish South Florida, the whole family was going to the Keys to swim with dolphins. It was near the end of the trip that I got a Facebook message from a stranger asking me to call when I had a chance. When we called I thought it was going to be someone informing us that they got a test kit and they were letting us know. When she said she was a match and was going to proceed with testing I ugly cried and said thank you probably 100 times. Maddy was so happy and made fun of me for crying. We continued our activities for the day telling everyone we saw that we found a donor like someone finding out they were having a baby. Again the process slowed down when you would expect it to kick into gear. Hurry up and wait was the motto.
Maddy’s function continued to decline and she became more symptomatic. A couple more months pass and on September 27th we found out she was an approved match. After years of illness, anxiety, and stress there was finally hope. We met our donor for the first time at the 2019 Tampa Kidney Walk. It was like meeting a long lost family member for the first time. We had a great day walking with her friends and family and raised a couple bucks for the cause. We opted to explore a paired exchange or swap after a lot of research. Maddy needed an A and our donor was an O. Maddy has a mentor through this that had been waiting 5 years for a kidney because she needed an O so we wanted to try and help someone that needed that O at the same time finding a better match for Maddy. The doctor decided on looking for 3 months and if we didn’t find anything we would go with our donor’s kidney. Maddy was heartbroken. She just wanted to get it done then and there and did not want to wait the 3 months. She calmed down after I explained it would be helping someone else and we probably wouldn’t have to wait the entire 3 months. A week after being put in the registry we had a new kidney and a date for the surgery. It went by pretty quick after that. We were still a little weary, imagining ever scenario that could have prevented the transplant but nothing happened.
With the thoughts and prayers from our family, friends, and community we prepared for the biggest day in Maddy’s young life. On 12/3 Maddy received her transplant and is recovering as I write this. Her new kidney started working right away and her kidney function has returned to normal. As we look forward to the new opportunities and challenges we stop to be thankful for all the people that made this possible. Thank you to our nephrology team headed by Dr. Valerie Panzarino , the wonderful people at Tampa General and their transplant team, and the admin of that Facebook group that accidentally deleted my post and set this in to motion. We will forever be indebted to our donor for not only giving Maddy a second chance at life but for helping me find peace and joy again and showing me the good people are capable of. We look forward to putting that energy back into our community to help others in their times of need.
