I’m raising funds for my brother, Nate Ward, and his wife, Noon. On May 3rd, they took their almost 4-year-old daughter, MaryJane “MJ”, to the Emergency Room after they noticed she had some swelling in her face, belly, and legs. She was admitted and stayed for three days. She was diagnosed with Nephrotic Syndrome (excessive loss of protein in the urine leading to symptoms like swelling/edema). The doctors were hopeful she would make a full recovery, saying 95% of kids recover well. They gave her medications and infusions, and the swelling started to go down, and her labs were headed in the right direction. So they discharged her with plans to continue meds and see a nephrologist.
The photo above was from that day MJ first went home. But several days later, the swelling returned, and thus they returned to the Emergency Room, and she was admitted again, given infusions, and sent home several days later on May 12th for outpatient treatment, still hopeful this was simple Nephrotic Syndrome. The swelling returned, and she was readmitted on May 20th. Her eyes were almost swollen shut. They continued treating her for Nephrotic Syndrome, but she wasn’t responding well. Over the next weeks inpatient, they were able to get a lot of the swelling to go down, except for her belly. Because she continued having swelling and excessive protein loss, on June 1st, she was moved to the ICU, where they did kidney biopsies and completed her first dialysis. Several days later, she spent her birthday in the ICU. The doctor later told them that he waited outside the room while they were celebrating MJ’s birthday before delivering what he described as the worst possible news he could be having to give. The biopsies showed that MJ has Diffuse Mesangial Sclerosis, a rare progressive kidney disorder, often caused by genetic mutations (they are still awaiting genetic testing results) and commonly progresses rapidly to end-stage kidney disease; which is where we are currently.
MJ has been receiving dialysis every day, but it’s been difficult. Her blood has been clotting, and they often have to stop, or it takes a long time (7-8 hours when it should take 4 hours). It’s been a lot for such a little one to endure. MJ is such a sweet little girl and has often been in high spirits, but everything is taking its toll. On Tuesday, the doctors decided that they need to remove both of MJ’s kidneys because of the continued protein loss, intractable edema, clotting issues, etc. They are trying to stabilize her enough to be able to do the bilateral nephrectomy surgery. The next night, MJ’s blood oxygen levels were dropping, but she wasn’t able to tolerate the nasal cannula or mask. She had really deteriorated over the last week. They began 24-hour dialysis (continuous renal replacement therapy) because she is now critically ill. Yesterday, June 12th, they intubated her and placed her on a ventilator. Today they took her to surgery to implant a dialysis chest port (replacing her groin venous catheter) and are continuing the 24-hour dialysis. We hope she is well enough to have both her kidneys removed on Monday and pray that the nephrectomy will be the procedure that will turn her around and get her out of critical care so we can move forward to the next steps of kidney transplantation.
It has been a difficult 6 weeks. Thankfully, Nate and Noon had recently moved to Las Vegas from Gulfport, MS, so they are much closer to hospitals and also to family.
However, Nate has limited paid time off work. And even with insurance, their portion of the hospital bills is already substantial with the first two admissions and this last, 3.5+ week admission, even before the nephrectomy and transplant. I’m starting this fundraiser to help Nate and Noon with MJ’s medical bills and also to have some funds for Nate to be able to take additional time off work during the transplant process, either as a donor or to care for MJ and Noon if Noon is the donor. Thank you in advance! Any little bit helps.
