At 8 weeks old Katie and Eric’s daughter Emerson developed a fever, so they took her to the emergency room. Once at the E.R., they were told there was something critically wrong with Emerson and they admitted her. After a week of testing, Emerson was diagnosed with Congenital Nephrotic syndrome– end-stage renal disease-which is a rare genetic issue.

What to Expect with Congenital Nephrotic Syndrome Diagnosis

Emerson’s nephrologist told Katie to NOT Google search “congenital nephrotic syndrome” because she didn’t want her to worry.  She did, however.  “The first thing I read was that most patients don’t live past the first year…it was heartbreaking,” Katie said.  Luckily, they were able to find a local doctor who had experience in treating babies with this disorder.  “After a week at our first hospital, we were transferred to the university hospital, and that’s been our home away from home ever since,” said Katie.

Emerson receives 24-hour care and does dialysis for 11 hours every night. Once Emerson is big enough, she will go through a series of testing in hopes of getting a kidney transplant.

Life with Diagnosis is a Juggling Act

Katie stays with Emerson whenever she is admitted to the hospital.  “She doesn’t stay for 24 hours.  It’s usually two to three days, sometimes weeks at a time,” Eric said.  To make sure everyone gets taken care of, Katie and Eric rely on family and each other.  Katie quit her job to be with Emerson.  Eric works nights so he can be home with their other daughters during the day.  While Eric works, Katie’s mom spends the night with the other girls.  It is a juggling act but they make it work.

Advice: It May be Hard Now, But it Pays Off Every Day

In Emerson’s short life, she has taught Katie, Eric, her sisters, and others so much.  “It’s really made us all more humble,” Katie said.  Emerson’s sisters adore her and they cheer her on with every new accomplishment; her newest one is walking.  “It’s inspiring to see that even though she goes through everything, you wouldn’t look at her and think that she’s sick,” Katie said.  They mirror Emerson’s happiness and embrace life for how it is.

Caring for a child with Congenital Nephrotic syndrome is anything but easy.  “Just know that there are going to be good days and there are going to be bad days.  You just have to roll with the punches,” Katie said.

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