Jamie F.

Child, Minimal Change Disease

In June of 2014, Jamie had what seemed like a typical childhood cold. When she wasn’t getting better and started running a fever, we took her to her pediatrician and an urgent care facility, who assured us it was “just a virus” and she needed rest and fluids. A week later, Jamie was not improving and we ended up in the emergency room with a diagnosis of pneumonia. The ER doctors also said she was dehydrated, so promptly gave her fluids. As we sat in the ER, I began to notice her face swell. Was it just my imagination? The doctors didn’t think too much of it, until my roughly 30-pound three-year-old puffed up like a marshmallow.

The doctors began to become concerned with her kidneys, but didn’t quite know what was happening. That night we were transferred to Montefiore Children’s Hospital in the Bronx, where we were told they had pediatric nephrologists who were more specialized in what they believed Jamie needed. I will always remember that middle of the night ambulance ride in the rain and being wheeled into an unfamiliar place, lying on a stretcher, holding my baby, unsure of our future. In the week that followed, we learned more than we thought possible. Fortunately, Jamie responded well to IV Lasix, albumin, and steroids. Jamie was discharged from the hospital and sent home just in time to celebrate her fourth birthday. She remained on high dose steroids for several months. Her tiny body that had puffed in the ER and then drained in the hospital began to feel the side effects of the Prednisone, as she suffered from moon face and mood swings.

A week after being released from the hospital, we also learned that Jamie had food allergies, as she suffered an anaphylactic reaction to walnuts. Another emergency room visit, another hospital stay. The silver lining? She was already on steroids. Her reaction was so bad that we may have lost her had she not had steroids in her system.

Fast forward to 2018… Jamie is a happy and healthy second grader. She is an excellent student and an avid reader. She’s an aggressive basketball player and recently won the second grade spelling bee. She has Nephrotic Syndrome (Minimal Change Disease) and food allergies, but we do not let them define her. They make her resilient and strong. With the support of our doctors and our family, Jamie knows there is nothing we can’t overcome.

Over the past four years, we have suffered with relapses. We have had plenty of ups and downs. There have been days when I didn’t think I could handle another relapse. Times we had to hold her down to give her medicine. Plenty of days where I cried the entire drive to work. But guess what? We got through it and I know we will continue to get through any obstacle thrown our way, one day at a time, because if this unpredictable disease has taught me anything, it’s to cherish every moment we have.

Knowledge is power. Take one day at a time. The sun will come out tomorrow!