Ella’s story with Nephrotic Syndrome begins in December 2018. Her entire family had the flu in mid-December - upper respiratory and stomach issues. Ella was the last to get sick; she was coughing and while she was sleeping, she had a hard time breathing – she had a lot of apneic episodes. Her parents had an adult practice physician who prescribed them to take Tamiflu, but when the pediatrician was called to let her know that he suggests both children be on Tamiflu as well, the Pediatrician refused to give it to Ella because she was considered "low risk" of getting the flu. Ella continued to get worse and began to gain weight. Her eyes and face were swollen as if she were having an allergic reaction.

After an unacceptable period of time begging for answers for Ella, they were finally able to give a urine sample, which was difficult as Ella was still potty training. Ella was a healthy 28 lbs., but in a matter of only 7 days, she was 42 lbs. Once Ella’s parents were able to get a urine sample tested, they received a call from their pediatrician telling them to meet her at the hospital. There, they learned Ella’s urine had astronomical protein numbers and she was needing to be admitted for blood work, Albumin infusions, and Lasix. Ella spent three days in the hospital and were discharged with a referral to Children's Mercy of KC, about two hours away to schedule an appointment with a Nephrologist. Unfortunately, that same night, they were right back in the ER of children's hospital as Ella was not eating, drinking, or urinating. There, they took more labs and fluids and sent us home and they were to meet with the Nephrologist the next day.

Upon meeting her Nephrologist, they learned that Ella had something called MCD (Minimal Change Disease). The treatment would be high-dose steroids for a minimum six weeks, and hopefully Ella would respond. Some children could be steroid resistant which is not something they wanted. Ella did seem to respond to steroids, but very slowly. By May 2019, Ella had already been hospitalized five times, all of which lasted 5-7 days. Her last admission she had Pleural effusion (fluid on the lungs.) At this point, her Nephrologist suggested the kidney biopsy because she could have another disease called FSGS, which can only be diagnosed with a biopsy. Ella was still holding on to a lot of fluid, her legs hurt her, and her mobility was getting worse. Many nights her mother held her in the bath tub and rubbed her aching body to provide her some comfort. Her little body was not handling the added weight well and breathing became difficult. Once they got the biopsy back and learned the diagnosis was FSGS it was like a weight was lifted from their chests, only to be replaced by another rock.

In July 2019, Ella was hospitalized again, where she received more Albumin and Lasix, but this time a secondary medication called Cellcept was added to Ella’s regimen. It helped some, but in Sept of 2019, it was determined she needed a little extra help, so Tacrolimus was also added to her regimen. Thankfully, this concoction worked for Ella and she reached remission in September 2019. However, in January 2021 when it was time to start Kindergarten, Ella relapsed. Since her relapse, Ella has been on steroids with three additional periods of remission and relapse. They aren't sure why she is relapsing – they are adjusting her Tacrolimus and discussing adding Cellcept again.

“This disease sucks, no child should ever go through what Ella has, but on the plus side, it has built our family up and made us stronger. I don't take any time with her for granted. It has brought my husband and I closer, and the bond between Ella and her baby brother is unbreakable.” – Shanna R., Ella’s mother (As of 10/25/2021)