Madyson's Medical Journey

Hello everyone, my name is Robyn Rivera, and I want to thank you for taking the time to read our story. We are a family of 6, myself, my husband Hector, our daughter Madyson, and our 3 dogs. We are humbly asking for donations because in just 2 short months we will be traveling to Cincinnati, OH to begin the process of our daughter receiving a life changing bone marrow transplant. In her short time here on this earth, she has gone through more than most people will ever experience in a lifetime. Madyson is a true warrior. I believe in my heart she will conquer this like everything else she has gone through.

My daughter Madyson is 5 years old. She was diagnosed in March of 2020 at 15 months old with Secondary HLH (Hemophagocytic lymphohistiocytosis), a rare life-threatening disease. I will never forget the feeling of being in a quiet hospital room, all alone due to Covid, when the door swung open, the doctors rushed in and sat right in front of me and gave me the devastating diagnosis, it felt like my heart had been ripped out. I just remember going numb and thinking how is this happening to our baby girl. I fell to my knees and cried so hard that I couldn't breathe anymore, crying out to God, begging him to save her life. At this point we were so close to losing her, and in an instant life as we knew it would never be the same. I will never forget the feeling of walking onto the oncology floor, and feeling the somberness that it carries. It felt like it was the longest night of my life. She then went on to complete a 5-month course of Chemotherapy and high dose steroids. As time went on part of us felt that this nightmare was coming to an end. Unfortunately, that didn’t happen, she continued to show signs of becoming sick again and a week after she finished treatment, she was diagnosed with another horrible illness, SJIA (systemic juvenile idiopathic arthritis). My husband and I felt like we were stuck in this nightmare but there we were, starting another treatment plan for her. We had no idea how difficult and overwhelming this new path would be. At that time her current Rheumatologist tried so hard to help her, but she became too complex for him, and we needed to seek care elsewhere. We started traveling out of town to Texas Childrens Hospital in 2021. We knew no matter what it took, we needed to give her the best care possible. A year later in October 2022, it felt like our life was shattered once again when she was diagnosed with another deadly disease, interstitial lung disease, Secondary to her SJIA. The feeling you get when you are told your child has another illness or another complex medical issue is something you will never get used to. The pain doesn't go away, it just becomes a part of who you are. This year alone, she has been hospitalized numerous times, due to uncontrolled disease and her lung disease progression. BMT has always been something that has been mentioned to us by her doctors throughout all of this, so we knew this would eventually become a reality for her. Her amazing medical team has tried so many different medications and treatment options, but still, she is not very stable. With lots of consideration and recommendations from her doctors my husband and I are taking a huge leap of faith and going forward with BMT. Madyson's window is closing, due to the progression of her lungs, there is an opportunity for us to do this now or we might lose this chance, forever. Seeing her suffer daily, having to get a daily shot, taking so many medications, getting her port accessed for weekly infusions, which is becoming harder and harder for her, to the point she has now started to see a psychiatrist for medical trauma. This is not the quality of life we want our daughter to have. The things we have seen our child go through is something I do not wish on any parent. Seeing her experience true fear, anger, and sadness will change you forever. At this point on her medical journey, we are putting this is God's hands and will continue to hold on to our faith.

We live in Houston, Tx and will be traveling to Cincinnati Children's Hospital for Madyson's BMT. They are the experts in SJIA/Lung disease patients and have done the most bone marrow transplants on patients like Madyson. Our household is a one-person income. My husband works very hard to support our little family so that I can be Madyson's full-time caregiver. We purchased our first home a few months ago to be closer to Madyson's doctors, so knowing he will be out of work has been stressful on top of our everyday lives. He just started this new job, and he has not accumulated any paid time off. Our 3 senior dogs will be in the care of my mother-in-law while we are away, and we will still need to continue providing for them as they are a huge part of our family. Your contributions will be essential to making sure we will be able to bring Madyson back to our home. We will need to travel to Cincinnati in January to start all of the pretesting that is required before the transplant date, which takes 2-3 weeks, and we will be returning early February to start the process. Madyson and I will be away from home a minimum of 6 months. My husband will be out of work for one to two months or maybe more, depending on how she is doing. The beginning of the BMT process can be very overwhelming and terrifying, as we want to be together as a family to support our daughter.

All of the funds we raise will go towards our mortgage, household bills, and expenses for our pets. Also, for us to be able to travel to and from Cincinnati, hotel cost, food and other expenses that will arise.

This has been an extremely hard decision as parents to make, but we know it's the only chance at giving our daughter a normal life. We appreciate all the help and support, even the smallest amount will make a difference. Please feel free to share, join and help us reach our goal! We have faith that God will lead us down the right path on this journey.