Walk for Kidneys Team Spotlight: Team Amanda

June 18, 2014
CHICAGO, IL

Team Amanda: In honor of Amanda Nabi

For having lived only 10 years of life, Amanda Nabi from Vernon Hills, Illinois truly understands empathy. On Sunday, June 22, Amanda and her team of supporters will attend their first National Kidney Foundation of Illinois’ Walk for Kidneys to support people affected by kidney disease, particularly fellow young patients who are unable to leave their hospital rooms.

In August 2013, then nine-year-old Amanda was diagnosed with IgA nephropathy, a disease that hinders the kidneys ability to perform their main function—filter waste—over time. Luckily, pediatrician Dr. Stephanie Baker identified Amanda’s diagnosis before facing severe kidney damage. Most doctors do not perform an annual urine sample test—but Baker did. Kidney disease shows no symptoms until irreparable kidney damage occurs, and if Baker had not taken proactive measures, she would not have diagnosed Amanda’s condition early on. Amanda’s mother, Aera Chung, urges other parents to screen their children for kidney disease before it’s too late.

“I am invested in raising money for this cause in hopes that others with this disease are as fortunate as Amanda and get diagnosed early” Aera said. “I am hopeful my Team Amanda page will educate our family and friends. As a mother and educator, I want to be a voice for my daughter.”

Amanda was initially reluctant to share her story. While she enjoys art class, music, and participates in the school band like many of her peers, Amanda feared acknowledging her kidney disease would mean facing social stigma.

However, over time Amanda has become more open in regards to her disease. She asked her mom if they could form a team and participate in the 2014 Walk for Kidneys—a bold step for her. Now, Amanda and her team of close family and friends known as Team Amanda have raised nearly $2,500 to go towards funding research and awareness programs for kidney disease.

While it’s easy for many to feel bitter about living with kidney disease, Amanda is able to put her situation into perspective. After visiting Lurie Children’s Hospital and seeing other children with conditions more debilitating than hers, Amanda said, “I want to raise money for the kids who have it harder.”

A recent fourth-grade graduate, Amanda has her sights set on summer. While continuing to fundraise for the event and design custom T-shirts for her Walk for Kidneys team, Amanda also anticipates attending cheer camp and tennis lessons.

Throughout this year Amanda, her sister, mom, and dad have felt immense support from doctors Stephanie Baker, Jerome Lane, and Candace Strauss. They now hope to reciprocate by joining the kidney community on June 22 and meeting other families like theirs. While they’ve raised significant funds so far, the family agrees their biggest donation is walking and showing support for the cause. 

“At first Amanda was shy, but now she’s embracing [her condition] more” Aera said. “It’s no longer about hearing she’s different… being at the walk will show her she’s not the only one.”

To make a donation or read more about Amanda's Walk for Kidneys team, click here. To register your own Walk for Kidneys team, visit www.nkfi.org/events/walk.

 

   

 

     

Help us raise awareness of kidney disease and how it affects your life.
To submit your story and let the public put a face to kidney disease, click here.