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Brenda Clark

Brenda Clark

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Our Mission is to help fund a cure for FSGS and Nephrotic Syndrome, spread the word about FSGS (Focal Segmental Glomerulosclerosis) and Nephrotic Syndrome, and bring a bit of joy into the lives of families that are stricken with this disease. We know that Marley will be the one to make the difference!

Marley is a very handsome, intelligent, athletic, and caring young man. He can walk into a room and win the heart of anyone by just walking through the door. His charm is worth millions, his smile is worth more, but more importantly, his empathy for others is genuine.

On Thanksgiving evening of 2011, we had to take Marley to the hospital because he was very swollen. We had noticed Marley’s drastic weight gain and had taken him to the doctor, but when we got Marley to the hospital, we were alarmed to find out that he had gained approximately 35 pounds in about 4 weeks. Marley went from 70 pounds to 105 pounds in that short time. St John’s Hospital quickly determined that Marley had Nephrotic Syndrome and transferred him to Children’s Hospital. After five days of draining fluid off of Marley, he was sent home. This battle went on for the next five months. Higher and higher doses of Prednisone were no longer keeping Marley in remission. After a kidney biopsy, the nephrologist put Marley on Prograf, an anti-rejection medication, for two years. The biopsy had shown that Marley had Minimal-Change Nephrotic Syndrome. Normally, this goes away after a couple of years. Marley seemed to be doing very well with this medication. In June of 2014, Marley was taken off of the Prograf. It was time to see if the kidney would return to its normal function. After a couple of months, we noticed Marley was beginning to retain fluid again. When the fluid retention begins, it is very difficult to stop without heavy doses of medications, administered at the hospital. After several different hospital stays, Marley’s new nephrologist requested that we do another biopsy.

Marley’s new diagnosis, FSGS, is a very different beast. NephCure estimates that there are currently 19,306 people living with ESRD (End Stage Renal Disease) due to FSGS, in part because it is the most common cause of steroid resistant Nephrotic Syndrome in children, and it is the second leading cause of kidney failure in children. About half of FSGS patients who do not respond to steroids go into ESRD each year, requiring dialysis or transplantation. Approximately 1,000 FSGS patients a year receive kidney transplants, however, within hours to weeks after a kidney transplant, FSGS returns in approximately 30-40% of patients. The biggest problem we are facing is that there is not enough awareness and research devoted to FSGS.  

As a member of this team, we are each playing a part in helping NephCure Kidney International save kidneys and save lives.

Will you please join us in this fight by making a donation today?

Remember the name Marley.....he will be the cure!

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