01/05/2026
Would you consider being a kidney donor?
Happy New Year! I am asking for help for our son, Deven.
As many of you know, our oldest son Deven is in need of a kidney. He was diagnosed with end stage kidney failure on June 24, 2025. This diagnosis was a complete shock to all of us. In July of 2025, he was diagnosed with x linked Alport Syndrome, which is a genetic condition that causes kidney failure. The good news is this isn’t a genetic condition that recurs with transplants.
Deven’s story: Deven was seen by his pediatrician in June 2025 for a scratched cornea and they referred us to Mass General for a sedated exam. In the Mass General ER, bloodwork was done. All of his levels were off, dangerously so. His kidneys were failing and he was in need of an immediate blood transfusion. Deven was transferred to the PICU and our lives were forever changed. A couple hours and several tests later our amazing and incredibly kind doctor broke the news that Deven had end stage kidney failure, he would not recover, he needed immediate dialysis, and we needed to get him on the transplant list. Shortly after that, Deven had a hemodialysis catheter placed in his chest and within an hour was receiving his first dialysis treatment. All of this happened in the first 48 hours. We were in shock but incredibly grateful for that scratched cornea. Deven spent two weeks in the hospital before coming home. Once home, he began experiencing neuropathy pain in his feet. This pain went from mild to severe in less than two weeks. During that time, we had doctor appointments, an overnight observation in the ER at Mass General, several different pain medications, and Deven lost a significant amount of weight. By the end of two weeks Deven was in so much pain he was no longer able to walk or stand. Marc had to carry him everywhere he went. On July 24, Deven was admitted to MGH again. This time he would spend a month in the hospital and go through what one doctor called “the million dollar work up” including PET scans, lumbar puncture, CT scans, MRIs, nerve and muscle biopsies, EMGs, ultrasounds- the works. During this time he still had dialysis three (or more if needed) times a week while fighting off fevers and significant pain. We never got an official diagnosis but the closest they could give us was Guillain-Barre Syndrome. (There is a case of a teen girl who had end stage kidney failure with similar nerve pain/muscle weakness as Deven and she made a full recovery after receiving a new kidney.) After Deven was medically cleared to be discharged from Mass General at the end of August, he was transferred to an inpatient rehabilitation hospital. He had not been able to walk or stand in over a month at this point and because of the weight and muscle loss, he also no longer had the strength. Deven spent three weeks at the inpatient rehabilitation hospital and started walking again after two weeks.
Through all of this, Deven has been unbelievably strong. All of his doctors and nurses have commented on his positive attitude and his ability to adjust to everything that has been thrown at him with grace. We are truly amazed at his resilience and how he handles every single difficult situation sets the tone for us. I don’t think Marc or I would have been so strong if Deven hadn’t been first.
Today, Deven is home. He has four hour dialysis sessions three times a week. He has physical therapy three times a week. He has steroid infusions first weekly, then bi weekly, then monthly and soon, not at all. He came home from the hospital with 17 daily medications and now he’s down to 10 daily medications. His levels are much better. We are in a routine and in a good place but Deven still needs a kidney. A kidney will significantly improve his quality of life. He will no longer need dialysis, he will have fewer food and liquid restrictions, more energy, improved chances of survival, it will be easier for him to work, travel, attend college and get back to running. Freedom.
We are looking for a living donor for our son, Deven. The benefits for a living donor include minimal wait time, immediate kidney function, best long-term results, having a surgery we can plan in advance, and the option for paired exchange (swap) if the donor and recipient are not compatible. He is on the wait list for a kidney now but the wait could be 5-7 years. There is no way to simply ask another person to donate a kidney to their child, so instead we are asking everyone who is comfortable to please share this post. The more people we can reach, the better our chances are of finding a living donor for Deven. If you are interested in donating please know all of your information is strictly confidential and the living donor advocates work for you to make sure donation is in your best interest. We (me, Marc and Deven) do not have access to any donor or potential donor information.
www.mghlivingdonors.org
Deven Marc Ricci
DOB: 01/03/2007
Thank you,
Kristine & Marc ❤️
