Families Share Their Stories To Educate Lawmakers About Role Of Children’s Hospitals

Kairi Ramirez is now a thriving 15-year old, but she’ll tell you it’s been a journey getting to this point.

“I don’t think I really had the perception that I was sick, really, until like the point where I was in the hospital and they were like, you have kidney and liver failure,” said Kairi.

During a routine physical when she was eight, doctors discovered Kairi had a swollen spleen. “When the ultrasound and bloodwork came in the doctor called us to her office and told us to rush her to emergency at Children’s Hospital," said Oscar Ramirez, Kairi’s father.

A DIAGNOSIS

At Children’s Hospital Los Angeles, Kairi was diagnosed with autosomal recessive, polycystic kidney disease. A congenital kidney disorder that also affects the liver.

“The only treatment over is actually the replacement of those organs with an organ transplant,” said Dr. Rachel Lestz, medical director of pediatric kidney transplantation at CHLA. “For Kairi, actually, her kidney disease progressed to the point of her needing help with her kidney function fairly quickly. She ended up starting on hemodialysis.”

THE TRANSPLANT

After nearly three years on dialysis, at the age of 11, Kairi had an 18-hour lifesaving kidney and liver transplant. As part of family advocacy day in Washington, DC, Kairi and her father are sharing their story with members of Congress.

“I think it’s really important to me that I advocate for people because I really just want to give a voice to people. “

A voice she says wouldn't be possible without the treatment she received at her pediatric hospital.

Kairi is approaching four years since having the double transplant. She’ll have to be on medication for the rest of her life in order to make sure her organs are functioning.

Because of her experience, she now wants to pursue a career in pediatrics.

This video contains handout pictures from the Ramirez family.