When Lily Rios of Ahwatukee was 3, seemingly innocent flu-like symptoms on Mother’s Day 2013 instead revealed serious kidney problems.
Five years later, after multiple efforts to save the child’s kidneys, she had both removed – 11 months of three-times-a-week hemodialysis.
A search for a donor eliminated family members who weren’t a match, Lily on Aug. 28, 2019, received a kidney from a friend of her mother who prefers to remain anonymous.
The ensuing two years have brought ups and downs – including a scare last fall when, during her annual check-up, Lily and her mother Becky Kopp received an unexpected shake-up.
“Her labs were a bit off and a biopsy found her kidney was 90 percent rejected. She spent 18 days in the hospital and since then she goes back for monthly IV infusions,” said Kopp, a lifelong Ahwatukee resident and 2001 Mountain Pointe High School graduate.
“She’s still in active rejection but it’s nowhere near as bad, Kopp said. “Thankfully, her kidney is still working.”
Because of her experiences at Phoenix Children’s Hospital over the years, Lily Rios has become a popular and articulate spokesperson at various PCH fundraising events.
This year, she is among nine patients, dubbed ‘superheroes’, who are featured speakers on the 9th Annual ABC15
Telethon benefitting Phoenix Children’s Hospital.
The telethon will be hosted virtually by ABC15 6 a.m. to 10:35 p.m. today, April 14. Donors can call the phone bank at 602-933-4567 the day of the telethon or visit TelethonforPCH.org to donate.
Viewers are encouraged to become Heroes for Hope with a $20 monthly pledge or a one-time gift of $240 or more that will also provide a stuffed animal to a current PCH patient in the donor’s name.
The event raised more than $769,000 for Phoenix Children’s patient families in 2019; it was canceled due to the pandemic last year.
Corporate sponsors will be providing matching gifts throughout the day. They include Desert Financial Credit Union, Accident Law Group and Scripps Howard Foundation.
This is Lily’s second appearance on the telethon, yet hardly her first time promoting the hospital and its many services provided to valley children since it opened in 1983.
Her journey, with its great successes and occasional setbacks, has been featured on radiothons, television interviews and as a patient speaker at the annual Ignite Hope – an annual candlelight walk early in the holiday season.
With 2020’s Ignite Hope candlelight vigil held virtually due to the COVID-19 lockdown, Lily watched it from her hospital room during treatments for her threatened kidney rejection.
“She definitely had some good days and bad days,” recalled her mother.
Lily is happy to be a part of any fundraising activity for Phoenix Children’s Hospital as it has been such a major part of her childhood for eight years.
“I like to be a spokeskid for Phoenix Children’s Hospital,” the youngster said. “I like to help with fundraisers and help the hospital anyway I can so other kids - like me, can be taken care of.”
The Paideia Academy fifth grader returned to class March 15 after more than one year of online schooling.
Lily’s mother, her dad Tony Rios and her Ahwatukee grandparents Bonnie and Roger Kopp have watched the scrappy youngster maintain her good spirits and equilibrium through many stages during her journey.
“Lily is still a rockstar in so many ways. Since her transplant, she’s shown me what true strength and determination is. She not only recovered from surgery but also started school again and has been able to catch up from the last few years, all online through a pandemic,” said Kopp, who left her career to focus on her daughter’s recovery.
“She is my daily inspiration. I look at her and know we can get through anything.”
Lily has returned to things she loves. An animal lover, she now appreciates time spent tending to her horses and donkeys and chickens at a family friend’s Cave Creek property.
She and her mother are also avid hikers and getaways to Sedona and Flagstaff are pastimes they enjoy together.
Phoenix Children’s Hospital means a great deal to the Kopp/Rios family.
“We’ve received such great care at Phoenix Children’s Hospital. No matter how hard it got, there was always an encouraging face cheering Lily on, joking with her, helping her get back to feeling like herself,” said Kopp.
“You can get great medical care at a lot of places; but it’s the people at PCH that make the difference."