Carson City girl walks in California to spread awareness of nephrotic syndrome
Carson City’s Makayla Warner, 10, is on a mission.
Saturday, the Carson Montessori student is off to Oak Hill Park in Danville, Calif., with her family, to participate in the Bay Area NephCure Walk as Team Mak Attack.
But that’s because Warner also has Minimal Change Disease, a type of nephrotic syndrome, and is hoping to meet other children battling the condition.
“I want people to know I want to find a cure,” she said. “That way, they can research more on it.”
Tuesday, Warner and her family held a fundraiser at Firehouse Subs to raise money for the family to participate in the walk, for a second year in a row. The family raised $1,055 overall from cash donations and shirts that read “We Fight for a Cure for NS,” sponsored by local business Battle Born Ammunition and Firearms.
“I’m impressed by the support given to us from the community,” said Shanna Cobb-Adams, Warner’s mother. “Makalya was born and raised in Carson City, and it’s a great town.”
According to the Clinical Journal of the American Society of Nephrology, MCD is the most common cause of the nephrotic syndrome in children, with 70 to 90 percent ages 10 and younger are diagnosed.
Cobb-Adams said Warner may be the only child in Carson City with the syndrome since Danville is the closest town to organize an annual walk.
“She has a huge heart to help other kids who are going through the same as she is,” she said.
When Warner was 2 years old, she started waking up with swollen eyes and stomach. After a few tests, Warner’s kidneys were leaking protein and she was care-flighted to Lucille Packard Children’s Hospital at Stanford, during Christmas Eve.
After a week in the hospital battling this rare kidney disease, she was diagnosed with MCD.
However, the word “minimal” may be misleading; Warner frequently relapsed and spent eight years on high doses of prednisone and other steroids to keep her kidneys functioning properly.
Cobb-Adams said although she was grateful for the treatment, the long-term effects of the drugs were severe and detrimental to Warner’s health and well-being.
“Last year, she was at her worst,” she said.
“She gained weight from the medications and she was bullied for it.”
This eventually led to a negative reaction to the treatment for Warner, as she was unable to walk for a week due to physical pain. She was hospitalized again on Easter 2016 to battle the reaction, and was sent home on crutches after a week of bed rest.
“I don’t think it ever goes away,” Cobb-Adams said.
In summer 2016, Warner was placed on a different treatment regimen with medication.
Since then, it has kept her in remission for one year, off of steroids.
“She’ll have to go back for a follow-up at Stanford soon,” Cobb-Adams said. “But we want to continue to be a part of the cause for years to come, and who knows if there are other kids are in this area who also are battling it.”
For Warner and Cobb-Adams, the next goal to reach is to start a local NephCure Walk in Carson City.
“My ultimate goal is to do a walk, spread awareness and transfer the donations to NephCure Kidney International,” Cobb-Adams said.
To learn more about the organization, visit give.nephcure.org.