Quinn Linzer, baby with rare illness, dies

Quinn Madeleine Linzer, the baby from Lynbrook whose brave struggle with terminal illness captured the hearts of Long Islanders, died Friday. She was 14 months old.

"She was everything for us but she went out the way she lived, on her own terms. It was peaceful, and it was at home, and we're thankful for that," said Eileen Linzer, her mother.

Quinn succumbed to Niemann-Pick Disease Type A, a rare, incurable genetic disorder that causes brain disease, physical regression and then death. Experts believe Quinn was one of only four children in the country with the disease.

Determined to give her as many experiences as they could, Quinn's mother and her father, Brett, created a list of places, activities and encounters they felt everybody should experience in life. Quinn's List grew to more than 30 entries, from being kissed by a puppy to going to Disney World.

"We're doing them as it fits in," Eileen Linzer told Newsday in a front-page story about Quinn published in February. "We're attempting to do as much as we can before next summer. We don't know how long we're going to have her or what condition she'll be in then."

Their hope, Eileen Linzer said, was to give their baby a life of quality while giving the couple and their sons -- Colin, 5, and Reid, 3 -- "memories that involve Quinn and not just pictures of her."

Quinn's parents had already crossed numerous experiences off the list, including visiting toy store FAO Schwarz, wearing a wedding gown, apple and pumpkin picking, having tea at The Plaza, attending Jets and Mets games, riding in a convertible, tasting ice cream and going to the ballet.

Summer might have proved their daughter's favorite season, because the beach topped her list.

"She loved the beach, absolutely loved the beach, the breeze specifically," Eileen Linzer said.

Quinn visited a number of beaches but Maine's York Beach, near the New Hampshire border, was her favorite. "We actually spent a week in Maine, at a place we've gone to for a number years," her mother said.

The couple chronicled their daughter's final days on a blog, www.teamlinzer.com. On Friday, above a photo of a smiling Quinn, the last entry read: "Everytime a bell rings an angel gets her wings."

Eileen Linzer said the family plans to memorialize their daughter.

"Our hope is to eventually set up a foundation in her name. We had started the process about a month ago -- but this is a bit earlier than we expected," she said. "Once things settle down, ideally we'll pick that up."

Quinn is also survived by grandparents Patricia O'Gara, Sherry Linzer and David Linzer, as well as numerous aunts and uncles.

Her family will receive friends Monday from 2 to 4 p.m. and from 7 to 9 p.m. at the Perry Funeral Home, 118 Union Ave., in Lynbrook. A funeral will be held there on Tuesday at 10:30 a.m., followed by interment in Locust Valley Cemetery.

In lieu of flowers, donations may be made toward Niemann-Pick Type A through the National Tay-Sachs & Allied Diseases Association or MJHS Hospice.

With Joan Gralla