Most Tuesday nights in the fall, Freeport’s Nautical Mile is quiet. Not so on Oct. 9, however. Outside Jeremy’s Ale House on Woodcleft Avenue, a line formed, as Freeporters waited to enter to support a fundraiser for 9-year-old Taliyah Baptiste, a fourth-grader at the New Visions School.
As of this week, “Taliyah’s Journey” had raised nearly $14,000 of its $50,000 goal on GoFundMe.com, with close to $7,000 collected at Jeremy’s alone to help cover Taliyah’s medical expenses.
She was diagnosed on Sept. 4 with diffuse intrinsic pontine glioma, or DIPG, a rare tumor that forms at the base of the brain. According to Taliyah’s mother, Lisa, 44, the tumor is inoperable and attached to the brain stem — the part of the brain that is connected to the spine.
The diagnosis was unexpected, Lisa said at St. Mary’s Children’s Hospital in Bayside, Queens. Taliyah has been in and out of hospitals for the past month and a half, and is now undergoing radiation treatment.
“She’s exhausted,” Lisa said. “Last week she was still really active and energetic, but this week she’s just worn out.”
Taliyah, her mother said, is active in a number of extracurricular activities that keep her and her husband, Collin, on their toes. If Taliyah is not running to dance, gymnastics or lacrosse, she is taking part in Freeport Girl Scout Troop No. 2453 or practicing yoga. When Lisa noticed her athletic daughter limping on her right foot and crossing her eyes, she worried.
“I asked her if she was OK after I noticed she was cocking her head to the side and squinting her eyes,” Lisa said. “But then I noticed the limping and knew something was wrong.”
Lisa took Taliyah to a pediatrician in Bellmore after the first day of school. Taliyah was immediately hospitalized at NYU Winthrop Hospital in Mineola.
“I thought I was going to take her in and out,” Lisa said. “I thought she’d get some type of medical treatment that was going to help her feel better, and we’d go back to normal.”
That has not been the case, and Taliyah had a week of radiation left, with follow-up appointments at Memorial Sloan Kettering Cancer Center in New York City. The subsequent four weeks will determine the next course of action.
“Clinical trials are our next option,” Lisa said. “We’ll go from there.”
According to the Michael Mosier Defeat DIPG Foundation, DIPG is most common among children ages 5 to 10, and its cause is unknown. “There’s little research on DIPG,” Lisa said. “I’ve been doing my research looking for all options, and if I have to take her to Europe for treatment, then I will.”
“I have faith,” she added. “I have faith that she’s going to get through this. I’m not saying this because she’s my child, but she’s strong.”
When Freeport PTA Council President Maria Jordan-Awalom heard about Taliyah’s condition, she immediately rallied parents, teachers and administrators to raise money to help the Baptiste family with Taliyah’s medical expenses by holding the Nautical Mile event, which included food, drinks and raffles.
“We’re hopeful,” Jordan-Awalom said. “This is something that is devastating, and they need help with it. We’re all stepping up and doing just that.”
One of Taliyah’s best friends, Danielle Guerrera, 9, from Levittown, said, “I’m really worried about her. I really want her to feel better and come back to church with us. I miss her.”
Classmate Laiyla Salome-Diaz, 9, a friend of Taliyah’s since kindergarten, drew a picture of her and their friends at school and quoted Gandhi: “I offer you peace, I offer you love. I offer you friendship. I see your beauty. I hear your need. I feel your feelings.” Laiyla submitted the picture to the Shanti Foundation art contest in hopes of winning a cash prize to donate to her friend’s medical expense fund — “So she knows she is not alone,” she wrote to the foundation.
Children and their parents gathered around a large poster featuring a photo of Taliyah, to leave “messages of love.” After writing her own encouraging words, Katherine Castelanos, Taliyah’s Girl Scout leader, said there was much love for Taliyah in the troop.
“These girls are like sisters to her,” Castelanos said. “It’s been hard for them because we’re all close, and they’re only 8- and 9-year-old girls, so they’re a little confused, but we’ve all been talking with them about the situation.”