Our Stories

Jalen's Story

In 2003, Jalen was diagnosed with Minimal Change Disease when he was just two-years old. From that day on, our lives changed entirely.

At first, we started to notice that at certain times he would get puffy around his eyes.  We went to the pediatrician a few times and were told the puffiness was due to allergies. Finally, over the course of several months and misdiagnoses, Jalen was diagnosed with MCD.

Jalen has had several relapses throughout the years and has been on Prednisone for most of his life. He was treated with Cytoxan, but it did not work for him. Cyclosporine, a miracle drug (or at least we thought it was), kept him in remission for almost two years; however, a routine biopsy showed it was causing damage to his kidney. He then switched over to Cellcept, a treatment that keeps him in remission, but the slightest cold or illness causes him to relapse. During his last relapse, Jalen developed an allergic reaction to albumin, a blood protein. Since then, treating his relapses has now become a little more complicated.

We struggle to accept our challenges in dealing with his illness such as the hospitalizations, appointments, biopsies, lab works, medications, constant tears, fears and uncertainties of the unknown future. However, we continue to hope and remain positive that he will outgrow his disease. We also pray that there will be a cure in the near future.

We are sharing our story to let you know you are not alone. Although the pain is great to bear, stay hopeful. I have learned to accept his disease and have vowed to never treat him differently or allow him to pity himself. Our positive attitude as parents will reflect in our children.

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