Paige Elizabeth keely was likely born with an Arteriovenous malformation

St. James Elementary School Principal Mary Grace Lynch, on Friday, Jan. 12, 2018, talked about how the school memorialized Paige Keely, a first-grader who loved to dance and charmed the audience in the school's "Nutcracker" production. Paige died Monday, apparently from a rare, undetected brain condition. (Credit: Barry Sloan)
By Nicholas Spangler
nicholas.spangler@newsday.com @spanglernewsday
Updated January 12, 2018 6:39 PM
Paige Keely, a first-grader who danced in St. James Elementary School’s Christmas production of “The Nutcracker,” took her family’s pet chicken for walks and loved collecting seashells on Fire Island, died Monday at Stony Brook University Hospital. She was 6.
The cause was believed to be complications of an undetected and rare condition called brainstem arteriovenous malformation, said her parents, Tom and Gina Keely. The condition, usually congenital, can lead to bleeding into the brain.
Paige — nicknamed Paigey Bean — lived with her parents, her older sister, Maeve, and her older brother, Ronan, in Nissequogue Village in a home they called their “house in the woods,” and in Kismet, on Fire Island. With them lived pets that Paige cherished: a dog named Annabelle, a rabbit named Herman Blume and a chicken named Chicklet, whom she sometimes carried under her arm on walks around the yard.
Paige Elizabeth Keely was born May 24, 2011. Gina Keely recalled a “firecracker” who, as a 3-year-old one Fire Island summer, grabbed a stranger’s ice cream cone for a lick. At home, she ruled over a small family of American Girl dolls. She dressed herself, often wore a bow in her hair and, on the day of “The Nutcracker” performance a few weeks ago, proudly wore her tutu to school. It was pink, her favorite color.
“She’d flit and flutter around the classroom and halls,” said St. James Elementary School Principal Mary Grace Lynch.
“I will never forget how precious she looked on stage dancing her heart out with her friends,” Kimberly Chacon, Paige’s first-grade teacher, wrote in an email.
On Monday, Gina Keely said, she packed Paige a lunch of scrambled eggs, cheese, grapes and home-baked pumpkin bread. She told her children she loved them and kissed them goodbye before they took the bus to school. They would have gone sledding that afternoon.
At lunch, Lynch said, Paige was at first her usual bubbly self. Then she told the lunch monitor that she had a headache. She went to the school nurse.

Gina Keely got a phone call telling her that Paige was crying and another one, two minutes later, that she was unresponsive and that an ambulance had been called.
The rest of the day was hell. “It was a nightmare. I just want to wake up,” Gina Keely said. At the end, she said, “we laid with her for a long time and kissed her beautiful body from head to toe.”
Gina Keely prayed then that they could “donate some of her body and hopefully have a piece of her save someone in the future. And maybe I could meet that person.”
That prayer was not granted. “We held her too long,” she said. She has no idea what time they left the hospital and got home to their house in the woods, only that it was dark when they got there.
The school district quickly mobilized counselors for students, staff and parents. Word spread. On Thursday, the Fire Department, the Community Association of Greater St. James and other groups lined Lake Avenue, the hamlet’s main thoroughfare, in pink ribbons.
“We as a whole town are mourning,” said Kerry Maher Weisse, who leads the Community Association and manages the funeral home where Paige’s wake was held Friday.
Besides her parents and siblings, Paige is survived by maternal grandparents Jill Ponchitera of Riverhead and Clint Carrano of Massapequa; and by grandmother Eileen Keely of Wantagh. She was predeceased by her grandfather, Eugene Keely.
Funeral Mass will be celebrated Saturday at 12:15 p.m. at Sts. Philip and James Roman Catholic Church, 1 Carow Place, St. James.
“We are beyond grateful and thankful for every single person in this community who is pulling for us,” said Gina Keely. “It means the world and is so comforting.”