Prayers, Tears Lead to a "100% Committment"

by Marie "Toni" Johnson

My name is Marie Johnson and my daughter Tommi Lee was diagnosed with FSGS in January of this year. Back in Dec of 2001 I noticed that her eyes were swelling and her stomach and legs seemed larger than usual. I took her to our regular Pediatrician who immediately recognized it as a kidney problem.

She set up an appointment the next day with Dr. Robert Cunningham, the head of Pediatric Nephrology at Cleveland Clinic. He told me that Tommi Lee had Minimal Change Nephrotic Syndrome and prescribed 60 mg. of Predisone every day for a month. Tommi started out at 56 pounds and in four weeks she went to 81 pounds. She was very uncomfortable and moody during that time.

At our four week follow-up, the doctor discovered that the Predisone did not help so he would need to do a kidney biospy. The kidney biospy showed that she had FSGS. He then prescribed Cyclosporin and told me to wean her from the Predisone. The weaning process of Predisone was a nightmare because she suffered extreme pain in her hands, legs and feet.

Tommi has been on Cyclosporin for almost three months now and she will be starting an ACE inhibitor this week. I'm happy to say that her face went down and she has lost 10 pounds. Tommi is still heavier than her normal size but she looks fine.

As far as next steps, the doctor tells me that we have to find the right medication to help get it in remission. Today I'm a much stronger human being. I would say in the beginning it had to be the most stressful and emotional time that I ever experienced. It's a scary thing to witness your child enduring so much suffering in pain. We prayed so very hard and so did my friends and family. I guess you can say that I'm a witness to the power of prayer too. I've never cried so much.

Today I'm more knowledgeable about this disorder and I make sure that I do my research when it comes to the medications and their side effects. I'm 100% committed to doing whatever I can to help raise awareness and funds in finding a cure for this disease.