Just like any typical 14-year-old boy, Rocco Murdocca was growing and changing. On the outside, nothing set him apart or caused alarm for illness.
The changes were normal, gradual, and slight enough that as an outsider, you wouldn’t be able to tell the difference. In fact, his parents, Julia and Rocco Sr., had a hard time realizing anything was wrong. The only sign that sparked concern was his weight gain.
“Over the course of a year, he gained almost thirty pounds! I thought he was getting fat and made him join the gym. He kept saying, ‘Ma, everyone at the gym says my legs are jacked.’ But they weren’t muscular, they were just building up with fluid,” Julia explained.
Confusion engulfed the Murdocca family, as they tried to piece together what could possibly be happening to Rocco’s body. “There were a lot of signs that were there, but we just never knew,” she recalled.
After a counterproductive trip to urgent care, Julia instinctively knew her son needed to see another doctor. Rocco’s pediatrician was the first to notice the spilling protein.
“The pediatrician then told us to go to the emergency room and that’s where they told us he has Nephrotic Syndrome,” Julia said.
During his stay 4 day stay in the hospital Rocco received several rounds of albumin infusions to improve his renal function. Over that short time, he lost the thirty pounds he had gained over the previous twelve months.
Just shy of his 15thbirthday, Rocco was initially given a rigorous course of steroids, but Julia demanded he receive a biopsy. It was that biopsy that confirmed their fear: focal segmental glomerulosclerosis (FSGS).
“I felt like I was in a dream. We all thought, we have a diagnosis, he’s going to take medicine, it’s going to get better. This happens to other people, this doesn’t happen to us,” Rocco’s mother said.
To their dismay, the steroids did not work, and Rocco was then given a concoction of alternative second line drugs.
“They did more damage than help for him. He wasn’t responding to any medication,” Julia noted.
Almost immediately after Rocco’s diagnosis, she saw a shift in her family. Rocco Sr. and her three older daughters kept their emotions, thoughts, and words to themselves.
“We were all just numb. We were afraid to discuss our feelings. My children were afraid to come to me and say, ‘I had a bad day.’ It was weird,” Julia said.
Despite the abounding hospital visits, medication, and side effects, she came to understand the importance of not allowing the disease take control of her and her family’s life.
“Don’t focus on the disease. You have to focus on your whole family because when you neglect other members of the family, that’s when you start to fall apart. That’s when you let the disease control your life,” Julia advised.
“Pay extra attention to the other children in your family that are healthy because although what they’re going through is not as serious as your child who is affected, what they’re going through is just as important.”
In the beginning of 2019, Rocco’s kidneys rapidly declined, losing nearly 90% of their function. This propelled him into dialysis only a month later, with a kidney transplant on the horizon.
Ultimately, Julia and Rocco Sr. made the decision to delay the transplant so that their son could enjoy his senior year of high school to the fullest.
“He wanted to go to prom, he wanted to go to on his senior trip, and graduate. So, we did dialysis until he graduated high school in June,” Julia noted.
In the meantime, both parents were tested and ended up being a donor match for Rocco. With Rocco Sr. being a stronger match, he agreed to give one of his kidneys to his son. And so, the preparation began. First came Rocco’s double nephrectomy on July 5, 2019.
The transplantation date was scheduled for just over a month later, on August 13th. Julia and her family remained steadfast, mentally preparing for the transplant without letting it consume their entire world.
As the transplantation date arrived, Rocco and Rocco Sr. courageously took on the disease together. Unfortunately, just four days after receiving his father’s kidney, it was confirmed Rocco’s FSGS came back. “We were absolutely devasted,” Julia declared.
Since August 17th, Rocco has been undergoing plasmapheresis and rituximab infusions in hopes of achieving remission.
“My son is resilient; I wish I had half of the strength that he has,” Julia expressed.
The Murdocca’s focus now remains on bringing Rocco back to full health.
Although, Rocco currently has a lot of unknowns, one thing he’s certain about is his love of all thing’s music. While he’s not positive where he’ll go to college, he knows his passion for playing instruments and songwriting will drive him to great success.