Help Support Harper's Fight Against Rare Kidney Disease

Harper is a bright, outgoing 9-year-old who enjoys spending time with her friends, playing the piano, singing and dancing.

On June 26th, Harper’s world got flipped upside down. She was seen by her primary care doctor due to swelling in her arms, legs, eyelids, and face. Initial bloodwork revealed abnormalities in her kidney function, and we were referred to a pediatric nephrologist. Harper was started on corticosteroids, with a follow-up scheduled with a pediatric nephrologist at Avera in Sioux Falls.

By Sunday, June 29th, Harper’s swelling worsened significantly, causing discomfort and tightness in her skin. She was taken to the ER in Marshall, where Avera Sioux Falls was consulted. They requested she be brought in medical diuresis—a treatment that uses medication to help the body get rid of excess fluid when the kidneys aren’t able to. Harper was admitted and successfully lost 8 pounds of water weight overnight. At this time, the working diagnosis was Minimal Change Nephrotic Syndrome—a condition where the kidneys’ filters become inflamed, causing protein (albumin) loss in urine, leading to severe swelling (edema).

Harper initially responded well to the diuresis and was discharged the following day on June 30th. However, over the next week her swelling returned—this time focusing in her abdomen. With a family vacation approaching, it was decided to bring her back to Sioux Falls for another round of diuresis to keep her comfortable.

On July 9th, Chelsey and Harper left for Sioux Falls. On the way, Harper suffered a seizure in the van just outside of Ihlen. Chelsey called 911, and the Jasper ambulance responded and transported them to the Pipestone ER, where Harper had a second seizure upon arrival in the ambulance bay. After stabilizing her in Pipestone, she was airlifted to the Avera PICU in Sioux Falls, experiencing a third seizure after they landed and a fourth that evening in the ICU.

Doctors determined Harper’s extremely high blood pressure, severe abdominal swelling, and nephrotic syndrome had triggered the seizures. An MRI confirmed PRES (Posterior Reversible Encephalopathy Syndrome)—a serious condition affecting the brain, often linked to kidney issues like Harper’s.

She spent three nights in the ICU and five nights in the hospital before being discharged. She was discharged Monday morning, and they were able to spend a few days at the lake with family. A follow-up appointment was scheduled for July 18th. After that visit, she returned again on July 25th, and by then it was becoming clear that the steroids were not working as hoped. A kidney biopsy was discussed, and another appointment was set for August 4th—unless her abdominal swelling worsened before then.

On Wednesday, July 30th, it was decided she needed diuresis again. At that point, the pediatric nephrologist scheduled the kidney biopsy during her hospitalization. The biopsy was performed on Thursday July 31st, and the results were received the following day.

The biopsy revealed something different than expected. Harper does not have minimal change nephrotic syndrome. Instead, she’s been diagnosed with Focal Segmental Proliferative Glomerulonephritis—a kidney disease where scar tissue forms in parts of the kidney’s filtering units, impairing their function. The pathologist also found a “full house” pattern—meaning all stainable antibodies appeared in the biopsy. These findings raise concern for an autoimmune disease, possibly lupus nephritis. Additional detailed antibody testing is now being done to try to determine a definitive diagnosis.

We’re incredibly thankful the biopsy was done—the change in diagnosis has completely changed her treatment plan and extended her hospital stay. Harper will complete 3 rounds of high-dose IV steroid course and begin monthly IV low dose Cytoxan (chemotherapy) treatments for 6 months. To reduce her risk of blood clots, she will likely start a blood thinner which will require twice daily injections until her albumin levels stabilize. The doctors are optimistic that she will be discharged on Tuesday, 8/5/25.

Due to the possibility of lupus nephritis Harper has also been referred to a pediatric rheumatologist. While they are based in Fargo, they travel to Sioux Falls about three times a month, so the family should be able to coordinate her follow-up care locally.

Over the last month, Harper has been hospitalized 3 different times for a total of 10 days as of 8/2/25. This journey has been incredibly hard for the Gravley family. With three other children at home, they are beyond grateful for their extended family and friends who have stepped up to help. But the financial burden is heavy—missed work, extended hospital stays, ongoing medical expenses, and upcoming treatments make this a challenge to carry alone.

Please prayerfully consider donating to the family, whether through donations or prayers. Every bit helps as they continue to focus on Harper’s care while navigating this uncertain road ahead. Funds will be used for loss of wages, travel, and

treatment!

Thank you for the love, prayers, and support.