Though Andrew Benjamin Warhaftig had been critically ill since age 4, most of his friends and classmates were unaware that the high-achieving, music-loving, perpetually smiling math whiz was sick. He didn’t talk about it.
But when he and his family were working to increase awareness about the rare kidney disease with which he had been diagnosed, along with helping to raise nearly $750,000 for research, Andrew addressed it at length and at every opportunity — in conversations and in his writings.
In a 2012 website post asking for donations to an organization dedicated to finding a cure for focal segmental glomerulosclerosis, he wrote candidly about the struggles that he usually kept from people outside his family.
“I have to worry about a lot of things that most kids my age don’t even think about,” he wrote when he was 11. “Most kids right now are wondering who their schoolteacher will be for the coming year or who is going to summer camp with them, but instead I wonder if one day I will get another kidney transplant and if I can ever live my life without FSGS.”
Andrew was a junior at Hingham High School when he died May 6 in Boston Children’s Hospital of complications from focal segmental glomerulosclerosis. He was 17, lived in Hingham, and had endured nearly 100 medical procedures during his life — including two kidney transplants.
In 2010, he wrote: “For a 9-year-old, I know more medical terminology than you could imagine from listening to my doctors and nurses and reading my lab and tests results.”
His illness grew more complicated as the years passed, though he wasn’t one to let others know what he was facing.
“He always had a smile on his face. He was just a happy guy,” said his friend James Winikoff, also a junior. “It took a long time before I realized the scope of his issues. Our conversations were normal teenage stuff: ‘Did you catch the Sox game?’ Or, ‘What did you think of that math test?’ ”
The weekend before Andrew died, James added, they talked about seeing the movie “Avengers: Infinity War.”
For years, Andrew and his family raised money for NephCure Kidney International, a Pennsylvania-based nonprofit that supports research to pinpoint a cause and find a cure for the disease, which attacks the kidneys until they no longer function.
In first grade, Andrew received his first kidney transplant — from his father, Jeremy.
“My dad gave me one of his kidneys and now he is living with just one,” Andrew wrote in 2011. “We were in the hospital together, side-by-side in the operating room.”
But a transplant is a “treatment, not a cure,” said Andrew’s mother, Elise. The disease also attacked the transplanted kidney and two years later, Andrew was facing 12 hours a day hooked up to a dialysis machine.
All told, Andrew’s family said, he spent about half his life on dialysis. He took 20 medications a day and managed them himself. Both his spleen and gallbladder were removed, as well as part of his colon. Because of rickets, which had softened his bones, he had screws in his legs.
“The disease affected every single inch of his body except for his brain,” his mother said. “He was so bright.”
Andrew embraced school, Hebrew studies, and extracurricular activities with uncommon vigor, friends and family said. He played soccer and other sports until he was no longer able, and then focused on music.
“I can’t really run around and play sports any more since I tire out easily, and I also can’t go swimming since I can’t submerge my dialysis catheter,” he wrote in 2012. “Fortunately, I play the piano and saxophone and sing, which I love. I love jamming with my guitar teacher.”
Along with his 15-year-old sister, Rachel, and his 10-year-old brother, Ethan, Andrew studied guitar with Jim Armstrong of Rockland, who said Andrew would horse around with his siblings “like he didn’t have a care in the world.”
Occasionally they would sing and play guitar during community events, such as the South Shore Art Center Arts Festival in Cohasset.
“Andrew had a beautiful tenor voice, and the three kids harmonized so beautifully, at perfect pitch,” Armstrong said. “They would get onstage and everyone there would stop what they were doing and look up and listen.”
Andrew’s friend Molly Schwall of Hingham, a high school junior, recalled their mutual love of ice cream and their Saturday choir rehearsals in Boston, which took place after Andrew had spent most of the week at Children’s Hospital.
“He just kept going,” Molly said. “Somehow he made it all work.”
Molly and Andrew also were lab partners in this school year’s physics class.
“He was always right beside me, ready to help me out,” she said. “He was so, so smart — and optimistic. If we got a problem wrong, he never got down. He’d just say, ‘OK, let’s do it again. How can we get it right?’ ”
Phil Struzziero, an English teacher at Hingham High, said Andrew was known for his excellence in math and science, but also was the top English student in his grade.
“He was the best student: resilient, courageous, enthusiastic,” Struzziero said.
In the hopes that he would be able to participate fully in high school without dialysis, Andrew received his second kidney transplant in eighth grade. Nevertheless, he often missed weeks or months of school.
When Andrew Skyped into the classroom from the hospital, which he did often, “kids would circle around the camera and do everything they could to include him,” Struzziero said. “He brought out the best in everyone.”
Andrew had played alto saxophone in the school band since seventh grade, said Brian Cincotta, a Hingham music teacher.
“He loved it so much and he was such a natural musician,” Cincotta said. “It was a joy to have him the room.”
Recently, Andrew’s lungs no longer had the capacity for him to play the saxophone, but instead of letting it get him down, he took up percussion, at which he excelled, Cincotta added.
“He really wanted to lead as normal a life as possible,” Cincotta said. “He was happy to be here, he was concerned for others, and he had this incredible enthusiasm and joy.”
A service has been held for Andrew, who in addition to his father, Jeremy; his mother, the former Elise Sheftel; and his siblings, Rachel and Ethan, leaves his grandparents, Toby (Bremer) and Eugene Halpern of Sarasota, Fla., Steven and Elaine (Isserlis) Sheftel of Boca Raton, Fla., and Sol and Susan (Klein) Warhaftig of Chicago.
The Warhaftig family said it has raised hundreds of thousands of dollars for NephCure, in large part thanks to a 5K run/walk that takes place annually each fall in Wompatuck State Park in Hingham. Andrew’s address to the crowd of hundreds of participants, many whom were his classmates, was a tradition.
“My hope is that NephCure is able to fund research that finds a cure for FSGS, and they say they aren’t very many years away from that hope becoming a reality,” he wrote in 2016. “I want you to know that I am a very hopeful person.”Kathleen McKenna can be reached at firstname.lastname@example.org.