Lily Rios needs a kidney.
After more than five years of various treatments for nephrotic syndrome and steroid-sensitive nephrotic syndrome, she underwent a bilateral nephrectomy on Oct. 6 – and lost both her kidneys.
The Ahwatukee girl is only 9.
It’s been a rough road for her and her family, and now they’re seeking a kidney transplant donor – not only for their daughter, but for others they’ve learned about who are also in need of a transplant.
“I’d love to have Lily get a kidney, that’s a given. But I also want to get the word out about kidney transplants to help not only my daughter, but everyone,” said her mother, Becky Kopp.
For Lily, a third-grader at Paideia Academy of South Phoenix, a charter school, the last few months have been especially difficult as her kidney function continued to decline precipitously.
Lily had been diagnosed at age 3 with nephrotic syndrome, a condition that causes the kidneys to leak large amounts of protein into the urine that leads to a litany of problems – including swelling of body tissues and a greater susceptibility to infections.
“The best way I can describe it is it’s an autoimmune disease,” said Kopp.
Mother and daughter had returned to Ahwatukee only the year before after living in San Diego. Becky Kopp grew up in Ahwatukee, graduating from Mountain Pointe High School in 2001.
Lily’s father, Tony Rios, moved to Phoenix shortly after to be near his daughter.
“He’s very, very involved,” Kopp said of her ex-husband.
The youngster’s disease became apparent five years ago on Mother’s Day 2013 when Lily came down with the flu.
“Through tests, they found her kidney values weren’t doing well,” Kopp said. “Within days she was at Phoenix Children’s Hospital for tests, and six weeks later we referred to the Nephrology Department.”
To treat Lily’s nephrotic syndrome, prednisone was required to induce remission - in her case, every day for three months she received 30 to 50 milligrams, an unusually high dosage.
“We tried for the last five and a half years to slow the decline, even chemo treatments,” said Kopp. “It was a matter of the meds not working anymore. In August of this year, we were back in the hospital.”
Tests at that time indicated Lily had only 22 percent kidney function.
“Her nephrologist said, ‘We can’t stop this, let’s start the process.’ And to even be considered for transplant you have to have every vaccination – even if they’re optional,” said Kopp.
After a kidney transplant, “live vaccinations such as those given for chicken pox or measles are no longer possible. “Dead” or “killed” vaccinations, such as those used in flu shots, can be administered to transplant patients.
On Sept. 28, Kopp and Lily went for their regular lab tests in anticipation of their pending Oct. 11 appointment.
In less than a month, Lily’s readings had dropped to 13 percent.
“I knew something wasn’t going well, she was just so tired and she had black circles under her eyes,” said Kopp. “She wanted to do the things she loved, she wanted to go to school and do her activities, but her little body just couldn’t handle that.”
Doctors decided that there wasn’t time to waste, and on Oct. 5, they removed both her kidneys and implanted a dialysis port in her chest. Her dialysis was started immediately.
And though Lily might be down, the scrapper wasn’t out.
“She’s a rock star, and that’s what’s been so amazing,” said Kopp about her 4 foot, 8 inch daughter who was released and came back home one week after surgery.
“I’m in complete awe of her. She knew the longer she stayed in bed, the worse she’d feel and once she realized being active would help her get better, she was constantly asking me to take her for a walk. And her pain tolerance must be incredibly high because she’s not taking the pain meds.”
Lily must undergo dialysis three times a week at an outpatient clinic on the campus of Phoenix Children’s Hospital while she awaits news of a possible kidney donor.
The youngster is stoic through it all. When asked about her disease and the recent transplant, she replied:
“I will just be brave, and everything will be okay.”
Lily lists among her interests karaoke, playing piano, swimming, camping and riding quads and a love of animals, including her three cats.
“She’d love to live on a farm with horses and goats,” her mother confided.
Since her daughter’s surgery, Becky Kopp has been on a mission. As she communicated with others in the East Valley and Ahwatukee who are also seeking a kidney donor, she felt compelled to speak for others in need.
“I already know I’m not a match for my Lily, but I have no problem being tested because I want to be a donor for someone else,” she said.
“And I want to get the word out, and not just to help Lily, but everybody who needs one. That’s my goal.”
Lily is expected to be listed on the Mayo Clinic/Phoenix Children’s Hospital wait list on Nov. 12. At that time, interested persons who have been pre-tested can step forward to be a donor.
Only one donated kidney is needed to replace two failed kidneys.
A three-and-a-half year employee at the Chandler-based Pride Group, a business known mainly for overseeing major special events like the Phoenix Pride Festival and Super Bowl, Kopp admits managing her job and surviving the last few weeks with Lily’s health issues has been difficult even with help from her ex-husband, coworkers, and mother and dad – Roger and Bonnie Kopp of Ahwatukee.
“I’m definitely tired,” she said. “When Lily was first diagnosed, it was so scary and overwhelming, but I look back now and think that was so much easier. You have no idea how strong you are until that’s your only choice.”
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