Three years ago, Lily was diagnosed with Focal Segmental Glomerulosclerosis (FSGS). Lily has had great care along the way with the limited knowledge that is there about her disease.
Currently, she is preparing for dialysis and kidney transplant, as she has not responded to any of the available treatments. Her quality of life is very different from her peers. Right now, her family’s hope lies in a kidney transplant. As terrifying as an organ transplant procedure and life as a transplant recipient is, this Lily’s only option. Lily’s family knows that there is research out there that could be life changing and life saving for their daughter and other people living with kidney disease and Nephrotic Syndrome. Lily’s family continues to hope that through organizations like NephCure, that research gets funded for FSGS treatments and ultimately for a cure.
Marcus was diagnosed at the age of 2 with Nephrotic Syndrome. After several weeks of steroids, the medication couldn’t put him into remission and his family decided to get for a kidney biopsy and genetic testing. The biopsy showed Minimal Change Disease, while the genetic testing confirmed that he had a genetic form of the disease.
The now 4-year-old is doing great under the careful watch of NephCure Specialist, Dr. Kenneth Lieberman at Hackensack University Medical Center. As for Marcus’ health, the future is still unclear because everyone’s journey is different. But, for the moment, he’s holding steady and his kidney function is normal. The only thing doctors can do is treat his symptoms because it’s genetic so he’s on high blood pressure medications and follows a low-sodium diet. Marcus currently attends pre-K. He enjoys karate, can name almost every dinosaur (including what they eat!), and loves swimming with his big sister, Arianna.
Kevin was diagnosed with FSGS in 2002, after having trouble finding a doctor who took his symptoms seriously. His kidneys were spilling protein for nearly 13 years, before he ultimately underwent a living donor transplant. He received his kidney from a college friend on July 12, 2017. A biopsy a year later, in 2018, confirmed no FSGS reoccurrence post-transplant! To read more about Kevin’s diagnosis journey, click here.
Alyssa was diagnosed with FSGS on March 3, 2016 and immediately started steroids. A few months after taking them, her body was still not responding. Alyssa tried multiple mixtures of medication to try to get her protein spillage under control, but unfortunately nothing worked.
She is now in stage 3 kidney failure and doing lipidpheresis. At first protein started to lower, but now is climbing back up. Alyssa’s nephrologists are considering having her try another medication, but with Alyssa not responding to anything, they are hesitant. If nothing starts working for Alyssa, stage 5 renal failure and kidney transplant are in her near future.
Laci was diagnosed with FSGS in 2009, roughly a year after her daughter was born. After speaking with her nephrologist, she believed having another child ‘wasn’t in the cards’ for her future. However, just before she planned to start harsh medications, she learned she was pregnant again.
She has now been in remission for a several years, but constantly wonders, ‘How much longer until I relapse?’ It’s a race to find a treatment, or a cure, before that day comes. To hear more about Laci’s pregnancy journey with FSGS, click here.
Esladis has been dealing with IgA Nephropathy for over 9 years, since she was 25. Esladis only has one kidney as she lost one when she was two years old to a tumor. It has always been her destiny to be special; that’s the way she likes to look at it.
This year, one month before going in for perinatal dialysis surgery, on a beautiful Saturday evening, Esladis was by the pool with her husband Leo. As they got out to dry, they saw a voicemail waiting for them. It is May 18th, 2019, one of the best days of my life; the voicemail was from the Miami Transplant Institute, the day had finally arrived after waiting for over three years. It meant a chance to continue living the life she had very much enjoyed. Esladis now has a healthy kidney and adjusting to a new way of life.
Billy is a recent college graduate who was diagnosed with FSGS during the summer before his junior year. He received a transplant during his last semester in college and is currently living with a new outlook on life.
Rocco was originally diagnosed with Nephrotic Syndrome at age of 14, but later confirmed he had FSGS. He recently received a kidney transplant from his father, Rocco Murdocca Sr., on August 13, 2019.
Unfortunately, just four days after receiving his father’s kidney, it was confirmed Rocco’s FSGS came back. Since August 17, 2019, Rocco has been undergoing plasmapheresis and Rituximab infusions in hopes of achieving remission. But his disease doesn’t define him; Rocco’s true passion is music. He knows his passion for playing instruments and songwriting will drive him to great success. To learn more about Rocco’s journey to transplantation, click here.