POWDERLY, Ky. — When you meet Cadence Stone, she looks and acts like any active, healthy teen.
The 13-year-old is tall for her age -- more than an inch taller than her mom.
Cadence is a straight-A student who likes math, animals and riding her Tennessee Walker named Sophia.
At her tender age, Cadence already has decided on a career as a pediatric nurse.
She appears to be the picture of health and well-being.
Yet, this Muhlenberg North Middle School eighth grader needs a kidney transplant. Currently, her kidneys are functioning at 25%. If they dip to 20%, Cadence will need dialysis.
As a preschooler, Cadence was diagnosed with focal segmental glomerulosclerosis, or scars in her kidneys' filters. That diagnosis comes with an expectation of dialysis and a kidney transplant.
Cadence managed pretty well until last summer, when she became more tired and told her parents she didn't feel well. They discovered her kidney function dropped about the same time she started taking a drug to treat her Crohn's disease, and doctors believe teen-related hormonal changes may be partly to blame.
On Jan. 15, she will meet with her transplant team at Cincinnati Children's Hospital in Cincinnati, Ohio. Her parents, Chris Stone and Leslie Waltrip, of Muhlenberg County, expect testing for live donors to begin soon after. Several people already have indicated they want to be tested as potential donors.
If a match is found, Cadence's transplant surgery will be scheduled. However, surgeons want to remove her kidneys six weeks prior to her transplant to reduce complications during the transplant surgery, her parents said.
During that six-week period, she will be totally reliant on dialysis.
"She's a pretty tough kid," her dad said.
Cadence agreed.
When she was 3, her parents noticed her abdomen appeared swollen. That was the first indication something was wrong.
"It got to the point that we could push on her stomach and our handprint stayed," Waltrip said.
At first, Cadence was diagnosed with nephrotic syndrome, a treatable disorder that doctors hoped would go into remission. Once she was diagnosed with FSGS, however, they felt sure she would eventually need dialysis and a transplant.
Transplant surgery costs can range from $100,000 to more than $800,000. Cadence's parents believe they have adequate health insurance.
However, many out-of-pocket expenses not covered by insurance -- lost wages, travel and lodging -- may cause financial strain beyond transplant costs, Stone and Waltrip said. For example, while Cadence is on dialysis before the transplant surgery, she may be required to stay in Cincinnati for an extended period of time.
Then, after receiving her transplant, Cadence must return to Cincinnati Children's Hospital twice a week for six weeks. For a while, she will go once a week. Eventually, she will make monthly visits.
Also, for the rest of Cadence's life, her copays and medications are estimated to cost about $5,000 a year.
To help with upcoming and ongoing expenses, Cadence's medical team at Cincinnati Children's Hospital recommended the Children's Organ Transplant Association. COTA is a national nonprofit that provides guidance to community volunteers who want to raise funds for a patient's transplant-related expenses.
Cadence's parents liked the idea of using COTA more than GoFundMe or social media efforts. They felt COTA brought legitimacy to the fundraising process because donations don't go to them or local volunteers. Donations go to COTA and are earmarked for Cadence's use.
Also, 100% of funds raised assist with transplant-related expenses, according to a COTA press release.
Stone also was impressed that COTA oversees the distribution of funds to recipients. Money raised for Cadence will be available throughout her lifetime.
"We want it there for her when she's 26 or 36," her dad said.
In Muhlenberg County, volunteers started raising money last month for COTA in Cadence's honor. They hope to raise a total of $50,000.
So far, the community has raised $8,600.
Contributions for Cadence may be sent to Children's Organ Transplant Association, 2501 West COTA Drive, Bloomington, Indiana 47403. Checks should be made payable to COTA with "In Honor of Cadence Stone" written on the memo line.
Donations may also be made online at www.COTAforCadence.com.
