Teen takes steps to help kidney disease patients
Senior is Gift of Life Walk's honorary chairwoman
BY BONNIE BURCH • THE TENNESSEAN
BRENTWOOD — Although this is the first time Katie Roy has been a part of the Tennessee Kidney Foundation's Gift of Life Walk, the Franklin 18-year-old knows all too well the struggles those with kidney disease face.
Diagnosed with cystinosis, a rare metabolic disease that not only affects the kidneys but also the eyes, as a toddler, Katie underwent dialysis for two years before receiving a kidney transplant at age 10.
Now a Franklin High School senior, she is the official honorary chairwoman for the fundraising walk, which begins Saturday morning in Brentwood's River Park.
"I'm really honored. Anything that I can do to help raise awareness for kidney disease, I'm all for it," she said. "I'm just glad that I get the opportunity to tell people about it."
Cystinosis is a genetic disorder that forms amino acid crystals in cells. Left untreated, children usually develop end-stage kidney failure around age 9. Only about 2,000 people worldwide have cystinosis.
Her family is no stranger to the disease. Katie's mother, Jenni Kloete, lost all of her siblings — a brother and two sisters — to cystinosis in the early 1960s.
"Katie has been seen by a team of wonderful doctors and nurses at Vanderbilt and Vanderbilt children's (hospital) since 1997," Kloete said. "We have the utmost respect and admiration for them as they have helped us through many medical crises. We are very blessed to have access to top-notch medical care and compassionate knowledgeable physicians we can trust in Middle Tennessee."
Katie's mother is also her kidney donor. She received the transplant in October 2002.
Katie no longer faces dialysis treatment after the transplant, but that doesn't mean she's totally off the hook. She takes medication daily to make sure her body doesn't reject the implanted organ and she must keep well hydrated by drinking water quite often.
"Since it also affects my eyesight, I'm really sensitive to the sun and light. So I must wear sunglasses and a hat to protect my eyes," she said.
Katie May Sing At Walk
She's also a budding musician who sings and plays the guitar much like her idol Taylor Swift.
Katie has performed at her school's open mic nights and recently she played at the wedding reception for her mother and stepfather, Rick Kloete.
Fundraising walk attendees might get to hear Katie perform. She's also raising money for the event. After setting a goal of $500, she surpassed that in just two days.
Now she's got a new $2,000 goal at her page www.firstgiving.com/katieroy.
Katie says she's glad to do it if it helps the Kidney Foundation.
"Not everybody is as lucky as I was. It's pretty expensive, especially for those who need to pay for their dialysis," she said. "And they pretty much help people afford that."