Kayleigh’s Story:

We would like to share the story of our daughter’s journey with Childhood Nephrotic Syndrome.

On February 20, 2008, my three-year-old daughter, Kayleigh, woke up with swelling around her eyes.  Thinking it was an allergic reaction to something, I took her in to see her doctor.  He could not find any problems, but gave us antibiotics, assuming the swelling was from some sort of infection.

Two days later, her stomach had become so distended that her clothing no longer fit.  I took her into the local hospital emergency room to find out what was going on. The urine tests showed high levels of protein and the attending physician made a call to the Cincinnati Children's Hospital, to work with them in finding an answer for my daughter’s issue.

An ambulance was sent to pick us up and take us downtown.  Once we arrived, Kayleigh was diagnosed within the hour with Childhood Nephrotic Syndrome.  We were informed since she was bad, we needed to return Monday morning to the Nephrology Department. Normally, that department isn't open on Mondays, but they would open for us.

We had the most wonderful doctors treat her through this hospital! I felt they were the strength I needed to get through this and be strong for my daughter.  They started her on 8 weeks of high dose steroids, which she responded to immediately. 

We began the process of weaning her off of them and with each change in dosage, I had a horrible feeling of dread, fearing she would relapse before making improvement.  After a few weeks of weaning Kayleigh off of the steroids, her doctor ended those treatments. He scheduled Kayleigh for a follow up in 4 weeks. That day, I left the office very scared that this was not "it." I knew we'd be back, and my heart broke.

I had seen my beautiful little girl change so much. One day she looked in the mirror and said to me, "Mommy, look at my face, what happened to it?" She had gotten bigger due to the steroids. Through it all, I continued telling myself that there are many parents who have lost children, who would love to be in my place. So, I needed to be thankful that if my child has to be sick, it is something we can treat. 

After the first 4 weeks off the steroids, our doctor waited for our call and anticipated an e-mail from me.   At the appointment, the doctor said she was officially in remission.  Kayleigh’s Childhood Nephrotic Syndrome never came back.

The doctor instructed us to return for check-ups every 4 months. Kayleigh officially went into remission on June 22, 2008. She has not had any relapses and we are hopeful that she will continue to remain healthy.