By Danny Schrafel
A Hills East freshman was recognized by a member of the House of Representatives for her campaign that harnesses the power of social media to raise money and awareness for her brother and others suffering from a rare form of pediatric kidney failure.
Congressman Steve Israel (D-Huntington) honored Sydney Levine, who founded the “Stand Up and Be Counted Challenge” to find a cure for Focal Segmental Glomerulosclerosis (FSGS) and Nephrotic Syndrome.
FSGS is the leading cause of kidney failure in children and afflicts her 11-year-old brother Matthew. To fight back, she turned her cell phone and those of thousands across the world into a fundraising tool.
Starting March 1 – which is Kidney Awareness month – Levine decided to give Matthew a birthday present. Along with her friend Parker Siegel, whose brother Owen has Nephrotic Syndrome, Levine made a video, challenging others to take a video or a selfie and post it with the hashtag #SUBCselfie to a social media platform. Then, with the missive, “keep the party going,” the poster challenges five friends to do the same and donate $5 to the NephCure International Kidney Foundation, which is dedicated to funding research to end FSGS and the other diseases that cause Nephrotic Syndrome.
It turned out to be a birthday present that was seen around the world and raised funds for NephCure. It also got Israel’s attention, who named her one of his “high school heroes.” She was recognized during a ceremony at LIU Post on June 6.
For the Levine family, Matthew’s plight became apparent when he was about two years old. The first sign, his mother, Dana Levine, said, was swelling of his eyes, then feet. A blood test revealed levels of protein in his blood high enough to be indicative of kidney failure. A later kidney biopsy showed “huge scars,” leading to his FSGS diagnosis.
The “spilling” of proteins from his kidneys, Dana said, is a result of the catastrophic damage.
“His are basically disintegrating because the proteins are spilling out,” she said.
There is no cure for FSGS; only efforts at maintaining Matthew’s quality of life. Those are running short, too. The family said they’ve exhausted “every clinical trial” for their son.
“It’s like walking in the dark, on glass, every day because you never know what’s going to happen next with this disease,” his father, Michael Levine, said.
For now, Matthew’s on a regimen of pills to treat high cholesterol, blood pressure and anemia; as many as 15 a day.
“It’s been a very, very difficult battle,” Michael said. “He’s my hero.”
But rather than give in to tragedy, the Levine family has joined the fight, teaming up with the NephCure Foundation over the last decade.
“You can either do nothing, or try to change a little something. That’s what we’re trying to do,” Dana said.
For the last 10 years, the family has worked closely with NephCure, helping to raise awareness and millions of dollars. Most recently, in Hempstead, the family participated in a 5K fundraising walk hosted by Mayor Wayne Hall, also a longtime FSGS sufferer.
Matthew is part of a growing number of Americans who will battle chronic kidney disease – one in every 2 million, his father, Michael said. About 8,500 people – 5,000 of them children – are diagnosed yearly, and 80,000 died from kidney disease last year, more than prostate and breast cancers combined.
The battle to find new treatments and ultimately, a cure, Michael said, will have wide-reaching impacts beyond their Melville neighborhood.
“I don’t want any other child or adult to have to battle or go through the same living hell we’ve gone through in the last nine-and-a half year battle,” he said.