One year ago, Kaley noticed Nadiya had swelling in her face and stomach. “She couldn’t bend over to play and she struggled to crawl in and out of bed,” said Kaley. “She wasn’t urinating as much as usual.”
Nadiya’s primary care physician referred her to UNC’s Kidney Center for studies. A kidney biopsy confirmed Minimal Change Disease, a condition in which large amounts of protein are lost in the urine. Conventional treatments typically rely on steroids, but in some cases, Minimal Change Disease can be unresponsive and may require additional immunosuppressant medications. These patients face bothersome symptoms, and with time, the prospect of kidney failure.
UNC pediatric nephrologists Dr. Keisha Gibson and Dr. Dorey Glenn suggested Nadiya and her parents consider participating in a research observation study called the Genie Trial. It would control Nadiya’s diet for observation, in an environment where protocols could be followed. In August, Kaley and Nadiya packed for Orlando, Florida, to vacation in a luxurious house with a hot tub and pool.
The trial–anonymously funded by a Brazilian family, whose own daughter had nephrotic syndrome which had gone into remission after a new diet–focused on a strictly organic, low sodium, gluten and dairy free, without salt or processed sugar. Meals were prepared by professional chefs, with simple and wholesome ingredients. A typical breakfast consisted of eggs, pancakes or gluten free cereal. For lunch, there was rice and beans, soup and salad, usually with grass-fed beef or chicken, and sometimes tofu. And after each meal, there was fun to be had.
“We took trips to Disney and the water park,” said Kaley. “Nadiya really liked playing in the water.”
In the evenings, they watched movies from their in-home theater. They enjoyed a private performance from former Ringling Bros. acrobats. “Often times, after dinner, the chefs would make an avocado. Nadiya liked a frozen fruit snack in coconut water.”
In September, Dr. Glenn met a bright-eyed Nadiya at UNC Medical Center. She wore a Minnie Mouse shirt and her disease was under excellent control. Kaley says spending time with parents of children with nephrotic syndrome was a valuable experience. She also learned a lot of new recipes.
“It was enlightening for me to meet other parents who share the same struggles. We exchanged phone numbers and most of us are friends on Facebook and a group on WhatsApp.”
UNC pediatric nephrologists continue to participate in a number of national observational studies for patients with nephrotic syndrome. “The medical needs of children are very different from adults,” said Dr. Glenn. “Children are still growing and they express themselves differently compared to adults. Some children are born with nephrotic syndrome and some develop it a young age. We’re dedicated to advancing new treatments that enable our young patients to enjoy a healthy childhood.”