By Mark Kimmel, UNC Health Foundation
March is National Kidney Disease Awareness Month, but for the Ward family of Holly Springs, kidney disease has been an all-consuming circumstance for the past two years. In 2021, the youngest of their three daughters, Lilly, out of seemingly nowhere became very sick.
“Lilly had just turned 11 and was always the healthiest child,” said Lori Ward, Lilly’s mom.
Lilly’s face swelled up and could barely open her eyes. Rising blood pressure sent her to the family pediatrician, Dr. Chris Wilson, who discovered with a few tests that Lilly had a kidney issue and pointed the Ward’s in the direction of UNC Children’s.
Within two days, Lilly met Katherine Westreich, MD, a UNC Health pediatric nephrology specialist, who confirmed two things for the family. There was something wrong with her kidneys and it would be a lengthy journey to diagnose Lilly’s condition.
Giving back
A servant at heart, Lilly is a giving person who enjoys helping others. Before her illness, she would make bags for the unhoused that included everyday items like deodorant, toothpaste and sunscreen.
In March 2022, the family organized an act of kindness day and visited local businesses with the intention of raising awareness for kidney disease. They rounded up a few gift cards, but the idea never really gained momentum the first time around.
“It was kind of anticlimactic to be honest,” explained Lori. “Certainly, underwhelming for Lilly.”
As March approached this year, Lori began thinking how to make more of an impact and raise the bar in 2023. The idea of a toy drive popped into her head after being reminded that all the items given to Lilly during her extended hospital stays came from donations.
“She [Lilly] loved the idea of putting things in kid’s hands, because she remembers what it was like being in the hospital,” Lori said. “We didn’t know how it would turn out, but Lilly and I sat down and made a wish list.”
A Facebook post to Lori’s page launched the donation drive and a goal of raising around $300 for kids being treated at UNC.
Lilly’s diagnosis
It took longer than normal for Lilly’s diagnosis because she has two kidney diseases – glomerulonephritis, and a benign disease called thin basement membrane, a rare disorder diagnosed in less than 1% of the population.
Lilly was treated for minimal change disease (MCD), a kidney disease under the glomerulonephritis umbrella in which large amounts of protein are lost in the urine. The inflammation in the filters and the absence of protein causes high blood pressure, high cholesterol, facial swelling and a suppressed immune system.
“She was never a typical patient,” said Lori. “Her body didn’t respond to the treatment the way it’s supposed to so she became steroid dependent and would frequently relapse over the course of 14 months of steroid-induced treatments.”
While the steroids placed Lilly into remission, the doctors were unable to get her off the steroids, so the family had to decide on a next course of action.
They chose an infusion called RITUXAN and in June of last year, Lilly had her first two infusions that kept her in remission for the next nine months. A more recent set of labs were drawn and after talking with Dr. Westreich, it was determined Lilly could come out of remission because cells had begun to repopulate.
“Lilly decided she’d rather be proactive rather than reactive this time in order to avoid steroids again,” said Lori. “The infusion went perfect in April.”
Thinking bigger
The initial Facebook post quickly gained traction with friends and family. More than $500 in donations came to the house in just three days.
“We would open the front door two or three times a day and have a pile of boxes sitting outside the door,” added Lori. “We even had a delivery driver make a donation after learning the packages were for UNC Children’s!”
A friend encouraged the Wards to think bigger on how to gather more donations. Lilly worked up the courage to explain the toy drive to a local Hallmark store employee that she’s known for many years from visits during Christmas.
“We figured they might donate one or two stuffed animals,” said Lori. “He held up two big bags full of Squishmallows. He donated more than $300 of these squishy stuffed animals that kids are crazy about!
“Our community and church really rallied around Lilly and that was so amazing to see.”
As the Ward’s house filled with boxes, they pivoted to adding wish list items for the nurses and child life specialists.
“It was surprising to me we got all that stuff,” said Lilly. “I was thinking we might fill up a small little corner in our house, but we would get 10 or 15 donations daily and it filled up half the room.”
The toy drive picked up steam as friends shared the idea on their social media pages. A Sunday school teacher from Lilly’s childhood repeatedly sent donations. Boxes would arrive from complete strangers just wanting to help.
“We got little notes saying, ‘I know you don’t know me, but my husband is on dialysis, and we just want to help what you’re doing,’” said Lori. “There were so many people who just opened their hearts to us.”
The final donation to UNC Children’s was $4,350 – well above the few hundred dollars the Ward’s hoped for at the start.
“We’re so grateful for the generous in-kind donations that we receive from the community, including patients and families who have firsthand experience with hospitalization and know exactly what speaks to our patients’ needs,” said Stephanie McAdams, Assistant Director of Rehabilitation Therapies at UNC Health.
“The toys, games, books, and comfort items not only provide a sense of normalcy for patients when so much is happening outside of their normal day-to-day routine, but they also provide members of our staff the opportunity to connect with patients and families in different ways.”
As one child put it, “this helps me remember that it is OK to be a kid again.”
Future toy drives
The family intends on doing another toy drive next March and is already preparing with an official Facebook page and a website for the event. They plan to call it Unfiltered Love from Lilly because of how her kidney filters are affected by the disease.
“We found something happy after something really hard that our family went through and continues to go through,” added Lori. “Lilly found so much joy in this project and we wouldn’t have done this had she not been sick.”