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‘My heart will never beat the same’

Freeport 9-year-old dies of rare brain tumor


Taliyah Baptiste loved reading, science, gym and sushi, and had an infectious smile that others were naturally drawn to, her family and friends say. On May 7, the New Visions School Elementary School fourth-grader died of diffuse intrinsic pontine glioma, a rare brain tumor, leaving many in Freeport in mourning.

“Today it is with the heaviest of heart that I announced that our beautiful baby girl earned her wings,” her mother, Lisa Baptiste, said. “May 7, 2019, will forever be etched in my heart.”

Taliyah was diagnosed last September with a DIPG tumor, which forms at the base of the brain. The tumor was inoperable because it was attached to the brain stem, which connects to the spine.

DIPG affects children ages 4 to 11. According to the Michael Mosier Defeat DIPG Foundation, roughly 200 to 400 children in the United States are diagnosed with the disease each year. Baptiste said there was only one other case on Long Island last year.

“Once her breathing was affected . . .,” Lisa began, before her words trailed off. “It was the disease, DIGP. [The tumor] had grown and spread all over.”

“Through this whole journey,” she added, “God carried us.”

Taliyah was born at Long Island Jewish Medical Center on June 9, 2009, to Lisa and her husband, Collin. She attended pre-school at Freeport Christian Academy and enrolled in kindergarten at New Visions, which she attended through last year.

Outside school, she took part in dance, gymnastics and lacrosse. She loved acting in the Freeport Recreation Center’s Broadway and You Program. And when she wasn’t busy in the children’s ministry at the New York City Church of Christ, she was earning merit badges with her friends in Girl Scout Troop 2453.

Girl Scout leaders Deborah Newton and Katherine Castellano said Taliyah was a talkative and spicy little girl who had nicknames for her friends.

“It’s not going to be the same without her,” Newton said.

“Every time I did something crazy,” Jennah Newton, 9, said, “she called me a ‘sass queen.’ I’m going to miss her calling me a ‘sass queen.’”

In Girls Scouts, Taliyah earned more than 60 merit badges. She also loved the beach and riding her bicycle. And she was a tiny jetsetter who traveled with her mom to England, France, Trinidad and Walt Disney World. She enjoyed camping and loved cruising as well.

“She is the light in my life, the one that I can look to and it all makes sense,” her mother said. “Every struggle, every adversity was worth it because I had unconditional love. She is my lifeline, my other heartbeat. My heart will never beat the same again.”

At Zion Cathedral Church in Freeport, family members, friends and classmates gathered on May 14 to host a spiritual service in honor of Taliyah. During the ceremony, classmate Laiyla Salome-Diaz, 9, read a poem. A handful of her schoolmates performed a dance, with her older sister Kahlicia Baptiste singing “Taliyah’s Song.”

“I loved that she wasn’t afraid to show how much energy she had,” Leila Baez, 9, said. “She was silly, she was crazy, but at the same time she was friendly.”

Leila and Taliyah had been friends for as long as they could remember, and were involved together in the children’s ministry at the Church of Christ. There were sleepovers and lots of girl time to goof off and be silly, Leila said.

“I miss her a lot,” she said. “I miss her joking around. When she got sick, I told her that I loved her. I wish she were here right now.”

In addition to her parents, Taliyah is survived her siblings, Kern DeCurry and Amera, Alicia, Shendelle and Kahlicia Baptiste, and a number of aunts, uncles and cousins. She was predeceased by her maternal grandparents, Claudia Edwards and Vernon Nelson, and her uncle Garfield Edwards.