Melville teen harnesses Facebook to raise awareness about kidney disease
Every day this month, Matthew Levine of Melville is posting thoughts and photos on Facebook to raise awareness about the rare kidney disease he battles. Credit: Dana Levine
Every day this month, 15-year-old Matthew Levine of Melville is posting thoughts and photos on Facebook to raise awareness about the rare kidney disease he battles.
On March 14, for instance, he posted a photo of him and his dad at a Yankee game last year, when they were shown on the Jumbotron wearing their NephCure T-shirts. “We won’t stop spreading awareness until a cure is found,” he writes.
NephCure Kidney International is a charity that raises money to research treatments and seek an end to FSGS (focal segmental glomerulosclerosis) and Nephrotic Syndrome. Gov. Andrew M. Cuomo has declared Tuesday Nephrotic Syndrome Awareness Day in New York State.
Levine was diagnosed with FSGS at the age of 2. He takes 15 pills a day; his kidneys are likely to fail and he will need a transplant. There is no known cause or cure.
In 2015, Levine’s older sister, Sydney, created a video challenge for Long Islanders to help raise awareness and money for NephCure. In 2016, she started the 31 days of MARCHing to Awareness on social media. In 2016 and 2017, she posted daily throughout the month of March.
Levine has now taken over the reins. He posts on his mom’s Facebook page, Dana Frank Levine.
“It’s time for him to advocate for himself,” Dana Levine says. “It’s a race against time to find a cure before his kidneys fail. We’re all nervous for what the next day will bring.”
Matthew was 11 when Sydney started her awareness campaign. Now he’s 15 and a freshman at The Portledge School in Locust Valley. “I was so proud of my sister for doing this for me. She’s the best sister ever. But it’s me,” Levine says. “I should tell my story and let everyone know how I feel.”
Beth Whitehouse writes about families, parenting and great things to do with the kids on Long Island. She’s been a Newsday editor and shared a 1997 Newsday staff Pulitzer Prize for coverage of the crash of TWA Flight 800.
