‘Something was going on with her kidneys. And they didn’t know what it was’

It happened so fast – the way Stacey Reyes’ 14-year-old daughter went from healthy to end stage kidney failure.

In August, Stacey noticed a few vague changes in her daughter. Elizabeth “Lizzie” Reyes had begun walking with a slight limp, her face appeared slightly thinner and her eyes seemed to bulge. But other than feeling a little tired, Elizabeth insisted she felt fine, Stacey said.

But Stacey wanted to be sure. So made a doctor’s appointment for Elizabeth. Stacey said the doctor was very reassuring but ran some blood work the following day to be sure Elizabeth didn’t have anything serious.

The next day, the doctor called and asked for Stacey to take Elizabeth to another facility for the same bloodwork; the doctor wanted to double-check the results, Stacey said.

Forty-five minutes after Elizabeth had the bloodwork, the doctor called Stacey and told her to take her to the hospital; that she needed to be admitted right away. But at the hospital, Stacey was told that an ambulance was coming to take Elizabeth to Lurie Children’s Hospital in Chicago, where Elizabeth was admitted to the intensive care unit, Stacey said.

“By the time I make it up to her room, three doctors are standing outside her door waiting for me,” Stacey said. “That’s when they told me something was going on with her kidneys. And they didn’t know what it was.”

But they soon found out. Elizabeth has nephronophthisis (NPHP), a cystic kidney disease that is the most frequent genetic cause of end-stage kidney disease in people 30 and under, according to the Journal of the American Society of Nephrology.

And unlike patients with polycystic kidney disease, those with NPHP either have normal or slightly diminished kidney size, the journal also said.

Treatment options are dialysis and kidney transplant. Stacey has already gone through testing to be possible kidney donor and she and is not a match. Her oldest daughter Ariel Ormsby of Colorad

o is currently undergoing testing, she said.

Stacey said any potential donors will have a compatibility test at Lurie Children’s Hospital to see if that person’s blood and Elizabeth’s blood are non-reactive, meaning Elizabeth’s body doesn’t reject it. Results come back in two weeks, Stacey said.

“If it is non-reactive, you will be sent to Northwestern to continue testing,” Stacey said. “This all will be covered by our insurance with no cost to you.”

“Unfortunately, they only test on person at a time,” Stacey said.

Elizabeth, for her part, is taking her health issues in stride, Stacey said. She added that Joliet West High School, where Elizabeth is a freshman, has been very understanding of Elizabeth’s situation.

Dialysis makes Elizabeth tired, so she usually sleeps a good part of the day after treatments, Stacey said.. She is keeping up with her homework the best she can, Stacey added.

Still, during Elizabeth’s first 12 hours in the ICU, Elizabeth had a kidney biopsy, a blood transfusion and a PIC line inserted so she could begin dialysis.

Elizabeth will also need surgery to place pins in her hip. She also has slipped capital femoral epiphysis. This happens when the growth plate is damaged, which causes the ball of femur to slip off the neck of the femur, according to the John Hopkins Medicine website.

Stacey said Elizabeth’s kidneys was absorbing the calcium in her body. An X-ray showed where the bones in Elizabeth’s legs “were slowing starting to dissolve,” Stacey said.

But Elizabeth does not have osteoporosis, and this second issue should correct itself now that Elizabeth is receiving treatment and because she is so young, Stacey said.

“She’s in great spirits” Stacey said. “She does not feel sorry for herself. She just does what she has to do to get through this and on with the rest of her life.”

In the meantime, Stacey said she takes Elizabeth to Lurie Children’s Hospital three times a week – Tuesday, Thursday and Saturday – for dialysis treatments. Elizabeth currently has only 10 percent of her kidney function, Stacey said.

Stacey said she, like many parents, look back at the situation and wishes they had noticed signs of Elizabeth’s kidney failure sooner.

“But even the nephrologist at the hospital told me, ‘Please don’t’ beat yourself up over this,’” Stacey said. “The patients are almost never diagnosed until we’re at this st

age.”

How to help:

Anyone interested in potentially being a live kidney donor for Elizabeth Reyes must

· Be at least one year postpartum

· Not have a pregnancy after first year of transplant.

· Be under the age of 55 and over age of 18.

· Not have diabetes, heart disease or high blood pressure.

· Have a body mass index under 35.

· Have blood type O, either positive or negative

For more information about donating, contact Kaitlyn White, the kidney pre-transplant nurse coordinator at Lurie Children’s Hospital at kawhite@luriechildrens.org or 312-227-6551.

To follow Elizabeth’s journey, visit Love for Lizzie Reyes on Facebook.