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Nephrotic Syndrome

Morea C.

Children

Morea Cummings presented with a virus at just 7 weeks old. While in the hospital, it was discovered that she was spilling protein in her urine. It was during that 10 day stay that it was assumed she had nephrotic syndrome. When Morea was six months old, a kidney biopsy confirmed Morea had congenital nephrotic syndrome. Furthermore, it was also confirmed through genetic testing that she had an extremely rare gene mutation of the WT1 gene. Morea was placed on multiple medications to slow the spilling of protein. None could stop it. Morea was steroid resistant; therefore, she depended on indomethacin and enalapril to slow the spillage of protein as much as could be done.

She also went to the hospital for quarterly ultrasounds of her kidneys to monitor for Wilms Tumor, another possible outcome of WT1, which Morea never developed. As a baby, she had a port placed for albumin infusions and frequent lab draws and a mic key button placed in her stomach for tube feedings. Living a great deal of life in the hospital as an infant caused Morea to stop eating by orally, which lasted the first several years of her life…

Morea is 5 ½ years post-transplant. Today, she enjoys dancing competitively, school, friends, girl scouts, being out in nature, and drawing.

At age 5 ½ and after a steady decline in function, Morea was forced to start peritoneal dialysis. She received treatments at home overnight, being placed on her dialysis machine for 10-14 hours every night, for one year. Four months after starting dialysis, Morea’s blood pressure was dangerously high, even with the 6 blood pressure medications she was on. She had a double nephrectomy.

During this year on dialysis, Morea did not feel well at all. She was always tired, nauseous, unable to eat foods high in phosphorus (like her favorite cheese!) without medication, struggled with both low and high blood pressures, and was only able to go to attend school a couple hours/day. At age 6 ½, in September 2017, one year and three nights after starting dialysis, Morea received a “new-to-her” kidney. Her nephrotic syndrome did not recur after transplant due to having a congenital form. Morea is 5 ½ years post-transplant. Today, she enjoys dancing competitively, school, friends, girl scouts, being out in nature, and drawing. Although transplant is not a cure and she will need another again someday, Morea is thriving in life today.

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