Mom Runs London Marathon for Daughter's Kidney Cure

When Nikki Robson's daughter Chacha was diagnosed with a rare genetic kidney disease just before her seventh birthday, doctors told the family to prepare for kidney failure, dialysis, and a lifetime of transplants. Instead of accepting that future, Nikki is lacing up her running shoes.

The 44-year-old mom from Whitstable, Kent, will run the London Marathon this April to raise funds for Kidney Research UK. Her goal is to support groundbreaking gene therapy research that could transform outcomes for children like Chacha.

Chacha lives with steroid-resistant nephrotic syndrome caused by problems in her NPHS2 gene. The condition means her kidneys leak protein, and without new treatments, she faces eventual kidney failure.

The journey to diagnosis took nearly six years of dismissed concerns and missed warning signs. Blood tests when Chacha was one year old should have caught the problem, but it wasn't identified until a simple dipstick test at age six showed dangerously high protein levels in her urine.

The standard steroid treatment that works for most nephrotic syndrome patients didn't help Chacha. Instead, it caused severe side effects including rapid weight gain and soaring blood pressure that required emergency hospitalization two hours from home.

"She's a little bundle of joy, but the treatment damaged her mental health," Nikki says. It took two years after stopping steroids for the family to get their daughter back to herself.

Why This Inspires

Learning about emerging gene therapies changed everything for the Robson family. What once felt like a hopeless wait for organ failure now feels like a race against time to fund the research that could prevent it.

Nikki can't conduct the gene therapy research herself, but she can run 26.2 miles to help make it happen. She's part of a growing team of fundraisers determined that lack of money should never stop life-changing treatments from reaching patients.

Chacha, now eight, remains her mom's biggest cheerleader—a super sweet, caring girl who isn't afraid to get stuck into anything, including fighting alongside her family for a better future.

Every mile Nikki runs brings hope closer to reality for thousands of children living with rare kidney disease.