Date: August 31, 2012
Title: Nephrotic Syndrome and My Son
There is one special hero in my life and his name is RUBEN NATHANIEL AMARU KING. I am blessed that God chose me to give birth to this little boy. My son is living with a chronic illness called Focal Segmental Glomerulosclerosis (FSGS), a rare disease that attacks the kidney’s filtering system (glomeruli) causing serious scarring and the kidney to spill protein. FSGS is one of the causes of a serious condition known as Nephrotic Syndrome. FSGS is “idiopathic,” which means it arises without a known cause, so researchers are actively trying to learn more about Nephrotic Syndrome. Former NBA basketball players Sean Elliott and Alonzo Mourning have both survived bouts against FSGS.
My son was first diagnosed when he was five years old. He is currently ten years old and hoping for a cure for this disease. One day, I noticed his face looked real swollen; it was in June and bees were out so I thought he was stung by a bee. When I took him to the hospital they explained he was diagnosed with Nephrotic Syndrome. The doctors came in and told me not to worry and that once he took steroids this disease would go away. They sent me home with a bottle of prednisone and an appointment to see the nephrologist. The next day, my son’s scrotum was the size of golf balls and he was two times bigger than what he was. Since then he has relapsed over twenty-five times and in 2008 he had a biopsy and it was then that he was diagnosed with FSGS.
Ruben is no longer in remission and will have to have a kidney transplant. I have seen my baby get stuck over a thousand times. He’s taken different medications to cure this rare disease which is more common in African-American males and aggressive. Nephrotic syndrome and FSGS are hard to treat along with anemia which has caused my son to have four blood transfusions this year. Ruben spends two weeks at home and two weeks in the hospital. Last school year Ruben was home schooled because he was so ill.
This disease causes hypertension and at one point Ruben’s blood pressure was 180/100. It is now controlled by medications such as, blood pressure medications and another medicine called prograf which suppresses his immune system. The number of times we have been in the hospital is almost crazy. My son has withstood this with a smile and yet his journey is still a hard road to travel.
For his mommy, Ruben stays strong. We have our days where now he is getting high doses of steroids but he isn't responding because he is still not in remission. He is my inspiration because he has not let his aspiration to be a football player die because of his disease. My son is my hero because it was him who said, "Please mommy don't give up on your dream of being a writer and finish your book." It was him who sits up with me late nights and cheers me on. For more information about Nephrotic Syndrome and FSGS please go to www.nephcure.org