Lourdes cousins teach others about Down Syndrome

 

If you go

A book signing for, In My World, Down Syndrome, featuring authors Gabriella Llano and Tiziana Vazquez will be at 5 p.m. Saturday at Books & Books, 265 Aragon Ave., Coral Gables.


Special to The Miami Herald

From her grin and mischievous personality to the navy blue bow in her hair, Daniella Llano is like a character from a book, a cross between the cute and fearless Madeline and the equally cute and outspoken Judy Moody, but with a twist you might not see coming.

Dani, as she is known, is a 9-year-old with Down Syndrome.

And she is the inspiration for the book, In My World, Down Syndrome, written by her sister Gabriella Llano, 15, and her cousin Tiziana Vazquez, 16, both sophomores at Our Lady of Lourdes Academy in Miami. The girls will appear at 5 p.m. Saturday at Books & Books in Coral Gables for a launch of the book, self-published by Author House.

More like sisters than cousins, the girls mirror their mothers, Dr. Ayleen Pinera-Llano, a pediatrician, and her sister Silvia Pinera-Vazquez, an attorney in Miami. While the two are like typical teenage girls who giggle and finish each other’s sentences, they are focused on sensitizing other children about a world unknown to most of their friends. The book is aimed at kids ages 9-13.

Gabriella and Tiziana say that growing up with Dani, watching her deal with the challenges of Down Syndrome and the example of openness and tolerance she has set for friends and family, has shaped their lives.

“She doesn’t see flaws in anyone,” Gabriella says.

“She doesn’t care how they look, who they are,” adds Tiziana.

“I feel like I’m more understanding of situations more open to everything,” Gabriella says. “It’s easier to see through people’s eyes. You get what they’re going through.”

The girls summed up the message of the book in one word — “empathy.”

“Empathy for the children who do go to regular schools and have a disability — how the other kids treat them,” Tiziana says.

The plot centers around 9-year-old Mika, who is struggling to fit in at a traditional school. As her friends mature, Mika’s social development is slow. She continues to enjoy toys and favorite television shows her friends have left behind. Her best friend is drawn to new friends who share her interests.

The book explores how a painful incident for Mika ripples through the lives of other members of the family.

Dani also attends a traditional school, St. Theresa Catholic School in Coral Gables, where she is the only child with Down Syndrome, Dr. Pinera-Llano says. However, she has many friends, and has not experienced the problem the character Mika faces, though she shares the character’s love of activities favored by younger children.

“Everyone knows her, and loves her,” says Tiziana. People, particularly children, who were not used to her spontaneous hugs, now welcome them.

“She’s such a big influence on the kids in her grade,” Gabriella says. “She doesn’t know it, but she is an example and they follow.”

How did two high school sophomores with classes and a long list of after-school activities manage to write a book? The two say they sought guidance from Denelsa Febo, their eighth grade English teacher at St. Theresa Catholic School in CoralGables.

“She was the one who opened our eyes to writing,” Tiziana says.

The girls say they knew they needed someone to enforce structure and deadlines. They finished the book last summer.

“We would meet like once a week,” says Gabriella, “and we’d have to have a chapter done.”

“Because she was like our teacher,” Tiziana says, “it was like homework. You don’t want to question the teacher.”

The girls say their family’s “village” approach to caring for and encouraging Dani set an example for them. Dani required occupational, physical and speech therapy as well as social skills and other activities, which required her mother and other family members’ time and patience. Dani does horseback riding therapy, as well as gymnastics and speech therapy.

Dr. Pinera-Llano says after Dani was born, she began to look for resources to help her daughter. She and a small group of friends, all mothers of children with Down Syndrome, lamented that there was no organization in Miami to provide education, resources and support to help families and children with Down Syndrome.

They founded the Down Syndrome Association of Miami. The girls will donate the money from book sales to the association. They hope to fund a large activity for the children, which Gabriella hopes will be a swim with dolphins.

According to the Centers for Disease Control and Prevention, about one in 691 children, or 400,000 people in the United States, have Down Syndrome, a disorder caused by a chromosomal defect. Children born with Down Syndrome have 47 chromosomes rather than the normal 46. An extra or partial copy of chromosome 21 changes the course of development.

The most common physical attributes include low muscle tone, small stature, an upward slant to the eyes and a deep crease across the center of the palm. People with Down Syndrome experience developmental delays and mild to moderate cognitive delays.

The girls were in kindergarten when Dani was born, and they didn’t notice her disability.

By age 9 and up, the age group they are targeting, things change, they say.

“Now is when their innocence goes away,” Gabriella says. “That’s why we wrote the book.”

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