Her Daughter's Flu-Like Symptoms Wouldn't Stop, Leading to a Rare Diagnosis That Keeps Her Out of School (Exclusive)

03/19/2025 03:02 PM

Nephrotic syndrome is a kidney disorder in which the kidneys leak excessive amounts of protein into the urine, leading to swelling

• In March 2024, Becca Whittle was having dinner with her family when she noticed that her daughter, Harper, wasn't feeling well and was showing flu-like symptoms
• Things progressed quickly: Harper developed a fever and began complaining of stomach pain. Concerned, Becca took her to urgent care to get tested and determine what was going on
• Not much later, she was diagnosed with nephrotic syndrome, a kidney disorder in which the kidneys leak excessive amounts of protein into the urine, leading to swelling, high cholesterol and other complications

In March 2024, Becca Whittle was having dinner with her family when she noticed that her daughter, Harper, wasn't feeling well and was showing flu-like symptoms. Things progressed quickly: Harper developed a fever and began complaining of stomach pain. Concerned, Becca took her to urgent care to get tested and determine what was going on.

There, Harper was diagnosed with Strep A and prescribed medication to treat the infection. However, the next morning, Becca noticed that her daughter's eyes were severely swollen, making it look as though she was having an allergic reaction. Realizing that something wasn't right, Becca and her husband decided to take action. While Becca stayed home to care for their 4-year-old son and newborn, her husband took Harper to the emergency room.

At the ER, doctors ran several tests and discovered that Harper was leaking a significant amount of protein into her urine. They recommended a follow-up with a nephrologist, which Becca and her husband arranged for March 14, 2024. That's when Harper, 6 at the time, was officially diagnosed with nephrotic syndrome.

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According to the Mayo Clinic, nephrotic syndrome is a kidney disorder in which the kidneys leak excessive amounts of protein into the urine, leading to swelling, high cholesterol and other complications. People with this disorder must follow a low-sodium, low-liquid diet. If they consume too much salt or drink too much liquid, they will experience swelling the following day.

"Emotionally, it was really hard at first because we kept wanting answers from the doctors, but they couldn't give us much," Becca, 34, tells PEOPLE exclusively. "There were so many emotional days where I just felt lost — like I didn't know what to do, how to help her. A lot of people were asking me when she was going to get better, and it was like, 'I don't know. I can't give you any specifics.' "

"There's no cure for it," the mom of three adds. "There are so many unknowns, which makes it even scarier because there's not much we can control. We just have to try different medications to see what works for her. None of it will cure her disorder, but we hope to get her to the point where she's not experiencing as many symptoms. Eventually, though, she will need a kidney transplant because this disorder damages her kidneys to the point where they can't regenerate themselves."

@beccawhittle

The last 7 months have been so incredibly hard & we have no idea how long this battle will continue. We pray every day that Harper will miraculously go into remission. #ourstory#herjourney#nephroticsyndrome#kidneydisease#sicktok#medicaltiktok#infusion#childrenshospital#littlewarrior#payoffdebttrend#medicalbills#gofundme#pleasehelp#prayersneeded

♬ It Won't Be Like This For Long - Darius Rucker

Since Harper's diagnosis, she has undergone two surgeries, four overnight hospital stays and 86 infusion appointments. Becca says Harper receives weekly infusions to flush excess fluid from her body, and each session can last anywhere from six to eight hours, depending on the treatment she's receiving that day.

With Harper, now 7, on so many immunosuppressants due to her condition, her nephrologist also recommended that she and her siblings stay home from school. This precaution is meant to protect them from germs and sick children, as Harper's kidney disorder acts like an autoimmune disease. Any illness — like a cold or flu — can attack her kidneys and worsen her symptoms.

Despite these challenges, Becca strives to maintain some normalcy for her family, relying on her husband and parents, who live nearby, for support.

"I wake up, give her her five medications, and test her urine at home to see if she's still leaking a lot of protein," Becca explains. "Then we have breakfast. After that, I try to do schoolwork with both her and her brother while they're more focused in the morning. Otherwise, by lunchtime, it's game over."

"After that, I let them run around and do whatever they want," she adds. "We try to go on walks outside. Thankfully, it's getting nicer out, so we can do things outside while social distancing. We avoid public places or crowded areas. Most of our time is spent at home — walking around our neighborhood, going to parks and having picnics."

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Since Harper's diagnosis, Becca has found solace in social media, sharing Harper's journey with nephrotic syndrome on TikTok in hopes of connecting with other parents whose children had been diagnosed with the condition.

But to the family's surprise, her videos have gone viral, amassing millions of views.

"When she first got diagnosed and was going to school and then experiencing all these symptoms, she got really, really shy, which is understandable," Becca explains. "I think her doing these videos and seeing that people are responding in a positive way and saying really nice things about her has helped her confidence a ton."

"She wants to do videos showing her outfit for the day or things like that, and it's just fun for us to get to do together," the mom adds. "She's my only girl, so I love being able to share this passion for style and makeup with her. It's been really, really fun, and it gives us something to do instead of just sitting at home all day. We get to be creative and create these fun little videos."

@beccawhittle

Harper wanted to show other kids that it's not that scary 🥺 #portaccess#portplacement#kidswithports#nephroticsyndrome#kidneydisease#caregiverlife#medicaltiktok#sicktok#sahmlife#momtok#adayinmylife#asmr

♬ original sound - beccawhittle

Becca says that because of her TikTok videos, many parents in similar situations have reached out to her, sharing that their children have watched Harper's videos and found inspiration in her strength. However, looking back on this journey, the mom says the hardest part of sharing it online has been opening up about the toughest moments.

One difficult moment for Becca came when Harper had to undergo a kidney biopsy, which required surgery to have a port put in her chest. The mom says having to deliver that news to TikTok followers was rough because she didn't want people to feel disheartened or give up.

Another scary moment, she recalls, came at the end of last year when Harper's lab results were concerning, and she was frequently falling ill, which impacted her kidneys. It reached a point where her nephrologist told them, " 'Okay, she's getting close to 35% kidney function at this point,' and when you get that low, you start discussing dialysis, kidney transplants — all the big, scary stuff," Mom recalls.

@beccawhittle

Harper had to get her port accessed and deaccessed today because we don't need to come back until next Tuesday! I was a little nervous that she would cry during deaccess, but she did amazing! #dailyvlog#todaysepisode#dailyroutine#comealongwithme#mommydaughter#childrenshospital#infusion#medicaltiktok#kidneyhealth#fsgs#nephroticsyndrome#ontheroadtoremission#portaccess#raiseawareness#proudmom

♬ original sound - beccawhittle

"So we started having those big, scary conversations. We were preparing to learn how to administer dialysis to her at home and planning for her to undergo surgery to have her kidneys removed so she could get on the kidney transplant list. It was terrifying," Becca recalls. "Luckily, her doctor decided to try one last medication. We gave it a shot, and thankfully, it worked."

"But that's just the reality of this type of disorder," Becca says. "With this, unfortunately, there isn't one thing we can try. There are 10 different things we have to try, and a lot of the time, they just don't work."

Since then, her lab results have started improving. She went from around 35% kidney function to 60%, which the family and her medical team are really excited about. While her function may never return to 100%, reaching 60% means the family can delay the need for a transplant for a longer period. Right now, their goal now is to maintain these positive lab results so she can continue growing.

"The longer we can keep her kidneys, the better, so that's our focus right now," the mom says.

Although the past year hasn't been easy for the family, Becca says it has made them — and especially Harper — so much more resilient. She constantly tells her daughter that she could be a nephrologist or a motivational speaker one day.

"She loves writing letters to other kids with nephrotic syndrome, sending gifts and making videos about it," Becca shares. "I tell her she could really be impactful, speaking from her own experience, helping others who are going through similar struggles. But when I ask her, she says she wants to be a baker and make cakes. So we'll see!"

She continues, "No matter what, her story is already inspiring so many people, and as she grows, I know she'll inspire even more. I'm not worried about that. I'm just hoping that once we get through all of this, she can return to a fairly normal life, and that this journey will only make her stronger."