Five thousand children in the United States are on dialysis for kidney failure. Every year, about 1,000 will develop kidney failure that requires treatment like dialysis or even a transplant. Yet, there are few known cases in the United States of atypical hemolytic uremic syndrome. One of the individuals with this rare disease is freshman Aneka Zarger’s seventh grade sister, Maya Zarger.

Aneka is a student at De Soto High School who has seen the effects of this rare disease—both mental and physical—before her very eyes.

“She has constant high blood pressure, nausea and doesn’t develop growth-wise as much as other kids,” Aneka said. “It’s also been challenging for her socially. She’s in hospitals so much and hasn’t had the ability to do as much as other kids, so she has gotten bullied because of it and sometimes it’s hard for her to know how to act around kids her age.”

Financially, of course, her family has also suffered. Hospital bills aren’t exactly cheap and since she’s constantly there, everyone has to give something up.

“It’s been tough. My dad works a full-time job, but my mom has to stay at home with Maya now, because she has to watch her so often,” Aneka said, “It’s definitely taken a toll on all of us.”

Since Maya has had this disease since she was six months old, making Maya feel included in Aneka’s life has been a constant struggle.

“One of the things Maya can’t do is swim in public pools, or do things normal children do. So, when I would go do things like that, it was always a question of how I was going to get there without her knowing, or feeling left out. I never wanted to hurt her feelings,” Aneka said. “And certain secrets have played a major role in our lives.”

Aneka’s friends are aware of how much Aneka has given up to help her sister and are very understanding when she can’t come to a sleepover or go to the mall on any given day.

“There’s been a lot of times where Aneka couldn’t come over because she needs to be with her sister, and I completely understand. It’s hard for her and she needs to be with her when she can,” freshman Sydney Hoover, one of Aneka’s friends, said.

Some good news, however, has finally reached the Zarger family. Maya has become active on the kidney transplant list, which is a huge step for her and her family going forward. This means she could soon be able to have a normal kidney like other kids and finally be able to do what normal kids can.

This gives Maya, her family and Aneka hope for the future.

“I hope she’ll finally be able to live like other kids and really, that’s all I can ask,” Aneka said.