My name is Jude and I have end stage renal disease (ESRD). I’m 2 years old and was born without functioning kidneys, so I’ve been on dialysis since birth. I love riding on my scooter, smiling, and "reading" books. I don’t love being connected to a machine on dialysis for 9 hours every day, or all the time I’ve spent sick and in hospitals. I’m so excited to get a kidney transplant one day!
That might be what our son Jude would tell you about himself if he could write :) Since he is only 2, we’ll tell his story as his parents and biggest advocates.
Jude has no kidney function and has always been dependent on dialysis, remaining in the NICU for four months before he was stable enough to come home. At home, Jude receives daily peritoneal dialysis (PD) and the daily care that comes with having renal disease. He also has a gastrointestinal tube (g-tube) and a central line. Each day includes nine hours on PD (5am-2pm currently), many medications, central line care, g-tube care, formula feedings, twice daily blood pressures and weights, dressing changes four days a week, and all the typical toddler care of course! Being on dialysis so many hours of the day, along with all necessary doctor and hospital visits, Jude misses out on many opportunities to leave the house for almost anything fun or “normal" - including visiting with family and friends or simply running errands or playing at a park. While on dialysis, Jude is restricted to his room, attached to his cycler machine by a line connected to his PD catheter. This has been more difficult as Jude has grown older and is wanting to move more and explore outside his room! (Jude cannot do dialysis adequately while sleeping unfortunately or we would be able to do it overnight for him, as most dialysis patients do.)
A kidney transplant would change and save Jude’s life. It would be incredible. Despite his frequent smile and happy attitude, Jude suffers greatly from his renal disease. A kidney transplant would improve Jude’s health and daily life tremendously. Perhaps even save his life, considering the infection risks and other life threatening complications that come with being on dialysis longer. As Jude’s parents, a transplant would mean hope for a better, longer, healthier, and happier life for our son. It would mean everything.
With a kidney transplant, Jude would have much improved overall health due to proper kidney function, he would not need to be on dialysis every day, require much fewer medications, fewer daily care routines like dressing changes and blood pressure readings, and we are told that he would most likely progress rapidly with his developmental delays and hopefully gain an appetite for eating real foods so he can wean off his current formula diet and g-tube feedings. We would be able to give Jude a real bath with the PD catheter removed, and Jude would finally be able to experience uninterrupted sleep by dialysis - we would too! With a kidney transplant, Jude would be healthy enough (and we would finally have the time) to take him out to play at a park, run errands, travel, and visit family and friends.
There is no cure for ESRD, only treatments. There are currently two options for treatment: dialysis and kidney transplant. Dialysis is only a short term option, due to the many risks for infection and other complications. A kidney transplant would drastically improve Jude's health, quality of life, and chance for a longer life. A kidney transplant can come from a deceased or living donor. Jude is currently on the national waitlist for a (deceased) kidney donor organ, and he could wait another several or more years before receiving an offer. The average wait time is 3-5 years for the over 90,000 people currently waiting for a kidney on the national waitlist. Receiving a kidney from a living donor would eliminate that wait time and the current risks to his health and life. With both of us parents ineligible to donate our own kidneys, we remain hopeful for a living donor. If you are reading this (and between the ages of 18-50), we ask that you please consider being evaluated as a potential kidney donor...your kidney could be the one that saves Jude's life! If donating a kidney to Jude is something you would like to consider, you can contact the Johns Hopkins Living Kidney Donor Team directly at 410-614-9345 or 1-888-304-5069 and mention that you are considering donating a kidney to pediatric patient Jude S., keyword: bluey. This entire process is confidential between the donor and donor evaluation team. If you would like to contact us for any reason, please don't hesitate to reach out to us at kidney4jude@gmail.com.
We certainly respect and understand that kidney donation might not be right for you personally. You can still be a champion for Jude, please share his story! We are hopeful these efforts will help Jude receive his life saving kidney and help raise awareness of kidney disease and organ donation. Thank you for reading and sharing Jude's story!!
If you are considering being a living donor please use links below to contact Jude Schwoerer's Transplant Center. Begin by completing the donor questionnaire
Did you know?
Medical expenses for living organ donors are 100% covered, and inquires from potential donors are 100% confidential! Contact the Transplant Center to learn more about living donation.
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