Kristen Merz, 37, Shoreham mother of 4 with rare autoimmune disease, dies while awaiting second kidney transplant

Kristen Merz, a Shoreham homemaker who lived for decades with a transplanted kidney, has died while awaiting a second transplant.

Her husband, Anthony Corleto, said Merz died on Saturday at North Shore University Hospital in Manhasset of complications from sepsis after the dialysis catheter in her chest became infected. Merz leaves four young children.

Merz, 37, had Goodpasture syndrome, a rare autoimmune disorder that causes the body’s immune system to attack its own lung and kidney tissue. As a teenager, she received a kidney transplant from her mother. When it began to fail about a year ago, she joined a transplant waiting list. Her family also sought donors through a Facebook page. While they waited for a match, Merz underwent about three hours of dialysis every other day.

"She was the glue holding this house together," Corleto said in a phone interview. "She was the heart."

Kristen Ann Merz was born Oct. 11, 1988, on Staten Island. When she was 9, her parents, Bill Merz, a building engineer, and Maureen Merz, a workflow coordinator for a law firm, moved the family to Hicksville.

Merz graduated from Hicksville High School and attended Nassau Community College before her health made it impossible to continue. She and Corleto, a film editor, met a decade ago through a mutual friend.

Merz loved reading and dancing and, before her recent illness, had hoped to begin a new hobby: foam sculpting, using a hot knife to carve and shape hardened foam. "She was accumulating the supplies," Corleto said.

Corleto stopped working regularly as Merz’s health deteriorated, and the family has opened a GoFundMe to help pay for medical and funeral bills.

Over the last year, after dialysis sessions, "There were days when she’d come home and sleep; she’d end up passing out," Corleto said. On better days, "I’d pick her up, she’d say ‘Today, I had a good day, I feel great,’ and we’d do a drive around town. We’d go home and she’d want to do something. She had lists of projects she wanted to do around the house. There was always something she wanted to rearrange or fix."

In addition to Corleto, Merz is survived by their children: Liam, 14; Adelaide, 13; Lucius, 5; and Anneliese, 4. She is also survived by her parents and by a brother, Billy Merz.

Corleto said that Merz "never wanted to be the absent mom. She wanted to make sure the kids saw her face, so she would pull herself out of bed and sit herself on the couch. When the babies got home from school she made sure they both got hugs and got as much time with her as they wanted."

In an online remembrance of Merz, Corleto wrote that she filled the family home with books, "shared stories with [the children], and encouraged each of them to find the kinds of stories that would spark their imagination the way reading had sparked hers. Watching them discover new books and grow curious about the world was something that brought her genuine happiness."

Maureen Merz said her daughter was a voracious reader, especially of suspense writer V.C. Andrews, whose novels she collected, including first editions.

Her daughter was "so sentimental" that she clipped a portion of the vine over the garage of her family home, and leaves from the tree in the front yard, to make a shadowbox.

"Everything she did was about making things special — holidays, birthdays, spending time with [her children] making crafts. Her home was surrounded by things her children made."

The family will hold a celebration of Merz’s life on Tuesday from 2 to 4 p.m. and 7 to 9 p.m. at Alexander-Rothwell Funeral Home in Wading River.

The funeral is Wednesday, 10 a.m., at St. John the Baptist Church in Wading River.

By Nicholas Spangler

nicholas.spangler@newsday.comspanglernewsday

Nicholas Spangler is a general assignment reporter and has worked at Newsday since 2010.